tag:blogger.com,1999:blog-8476814094380898232018-08-28T07:03:17.419-07:00Ryan's RevengeA little boy and his family's journey through life with Septo Optic Dysplasia, Hypotonia, Infantile Spasms, Global Development Delay, Bilateral Perisylvian Polymicrogyria and Autism.Jen Quinlan-Bangildhttp://www.blogger.com/profile/13468233369422016017noreply@blogger.comBlogger26125tag:blogger.com,1999:blog-847681409438089823.post-49666228274443936642014-02-26T07:03:00.001-08:002014-02-26T08:37:17.918-08:00The adventures of Ryan's crib and new bed!So back in May 2013, Ryan fell out of his crib - HARD! His crib was already at his lowest of the 3 settings so we completely dismantled the entire thing and put the mattress directly on the floor inside the crib. This bought us a lot of time while we figured out what to do next. Due to his low vision, global development delays and (possible) autism, Ryan has absolutely NO safety awareness. He needs to be kept in a enclosed space at night to keep him safe and in a way force him to sleep. I have no doubt that he would scoot all over his room looking for things to do if he was in a regular old bed. It would be a nightmare! <br /><br />Ryan is a very active child! He wiggles and squirms and gets himself into the strangest of positions. He started getting into the habit of wedging his legs right up to his thigh in between his crib slats (see below - he was jammed in there so tightly I had to grab a couch cushion to hold up his leg while I figure out how to get him out - grabbed the camera too of course!):<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-VXUxn6TjfJ4/UtmKMy4tZTI/AAAAAAAAAhY/vbSTLQxu-w4/s1600/IMG_00001323.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-VXUxn6TjfJ4/UtmKMy4tZTI/AAAAAAAAAhY/vbSTLQxu-w4/s320/IMG_00001323.jpg" /></a></div><br />In order to prevent that from happening again my clever Mom came up with this:<br /><br />Pool noodles cut to size and split then wrapped in duct tape to match the rest of his room (high contrast colours to stimulate his vision).<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-AK9HRZStIdk/UtmKT8UpfZI/AAAAAAAAAhg/9eAwdsVbZzA/s1600/crib2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-AK9HRZStIdk/UtmKT8UpfZI/AAAAAAAAAhg/9eAwdsVbZzA/s320/crib2.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-U9u6ST5yV-s/UtmKUuzOTMI/AAAAAAAAAhk/lW3_U7Zg3Y0/s1600/crib.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-U9u6ST5yV-s/UtmKUuzOTMI/AAAAAAAAAhk/lW3_U7Zg3Y0/s320/crib.jpg" /></a></div>He loved the latest modification done to his crib as you can see:<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-cTjGQur4OrA/UtmK86jd5WI/AAAAAAAAAhw/D0yrX9hQNhU/s1600/IMG_00001363.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-cTjGQur4OrA/UtmK86jd5WI/AAAAAAAAAhw/D0yrX9hQNhU/s320/IMG_00001363.jpg" /></a></div><br />But then things like this started happening again (yes he is totally and completely stuck - and yes I'm that horrible parent that quickly grabbed her camera to document these events - lol):<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-pCDlocrcCk8/UtmMKzBU0qI/AAAAAAAAAh8/lVHlVlF0fn0/s1600/IMG_00001385.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-pCDlocrcCk8/UtmMKzBU0qI/AAAAAAAAAh8/lVHlVlF0fn0/s320/IMG_00001385.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-GnpXI_0UeFk/UtmMK7E40nI/AAAAAAAAAiA/u0oRH6pXu74/s1600/IMG_00001404.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-GnpXI_0UeFk/UtmMK7E40nI/AAAAAAAAAiA/u0oRH6pXu74/s320/IMG_00001404.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-sN2v9IGOYB0/UtmMLO_zh_I/AAAAAAAAAiE/utV5iyZ-sTo/s1600/IMG_00001405.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-sN2v9IGOYB0/UtmMLO_zh_I/AAAAAAAAAiE/utV5iyZ-sTo/s320/IMG_00001405.jpg" /></a></div>So then we did THIS - lattice screwed right into the crib frame all the way around his crib:<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-QOpZ9HCulD4/UtmNceZnCQI/AAAAAAAAAio/226_AAeQdaA/s1600/IMG_00001554.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-QOpZ9HCulD4/UtmNceZnCQI/AAAAAAAAAio/226_AAeQdaA/s320/IMG_00001554.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-AZaggciM1HM/UtmNc1fAaWI/AAAAAAAAAis/THKRJlZT2Kg/s1600/IMG_00001555.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-AZaggciM1HM/UtmNc1fAaWI/AAAAAAAAAis/THKRJlZT2Kg/s320/IMG_00001555.jpg" /></a></div>No more escaping limbs!<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-MQO6i_sVxVM/UtmNdBtC79I/AAAAAAAAAiw/U8J_tjXTDgw/s1600/IMG_00001561.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-MQO6i_sVxVM/UtmNdBtC79I/AAAAAAAAAiw/U8J_tjXTDgw/s320/IMG_00001561.jpg" /></a></div>Safe and happy again!<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-ANwop3DUkfg/UtmN5THAkcI/AAAAAAAAAjA/ujakch_h9_0/s1600/IMG_00001564_edit.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-ANwop3DUkfg/UtmN5THAkcI/AAAAAAAAAjA/ujakch_h9_0/s320/IMG_00001564_edit.jpg" /></a></div><br />We knew he couldn't stay in his crib forever but we also knew as I mentioned above that Ryan has no safety awareness and that something needed to be done soon to keep him safe in the future and give us as his parents peace of mind.<br /><br />We looked at tons of different options. A lot of the special needs beds out there are much too involved (making them pricer) than Ryan would need. Some of the simpler ones wouldn't work for him because he likes to stand and jump in bed and they just wouldn't be safe enough for him. There were 2 that we were considering but were still very much out of our price range! I mentioned our dilemma in the "Make It Tips for Special Needs" group on Facebook and with their help decided upon converting a bunk bed frame into a super sized crib. Luckily for us my amazingly talented (and patient) Dad offered up his carpentry skills - we told him our plan and set him loose!<br /><br />This is the bunk bed we chose. It is from a store called JYSK and is called the "Jayden Bunk Bed".<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-hYhe165RShk/UuWUIiMqP_I/AAAAAAAAAlY/g56bGvX7C6Q/s1600/download.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-hYhe165RShk/UuWUIiMqP_I/AAAAAAAAAlY/g56bGvX7C6Q/s640/download.jpg" /></a></div><br />My Dad started first by turning the top bunk end upside down and securing it to the bottom bunk end:<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-8hG7gF5lpr0/UuO2KVc2WeI/AAAAAAAAAkg/yXt1NyT6NAY/s1600/photo+3.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-8hG7gF5lpr0/UuO2KVc2WeI/AAAAAAAAAkg/yXt1NyT6NAY/s320/photo+3.JPG" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-g8qgtB2hOlE/UuO2LkDQAxI/AAAAAAAAAko/bNYZhzxo_oY/s1600/photo+3+(1).JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-g8qgtB2hOlE/UuO2LkDQAxI/AAAAAAAAAko/bNYZhzxo_oY/s320/photo+3+(1).JPG" /></a></div><br />Once both ends were secured the side rails were installed:<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-IBiV7X07_tI/UuO2Qg_6i2I/AAAAAAAAAkw/FlO-aGpqFtM/s1600/photo+1+(1).JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-IBiV7X07_tI/UuO2Qg_6i2I/AAAAAAAAAkw/FlO-aGpqFtM/s320/photo+1+(1).JPG" /></a></div><br />Before the doors could be built the head and foot boards needed to be trimmed and sanded so the doors would sit flush with the rest of the frame:<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-uHuG6Z3aW9w/UuWUXjhEFrI/AAAAAAAAAlg/QZSZDo-1ygQ/s1600/shaved+edge+for+doors.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-uHuG6Z3aW9w/UuWUXjhEFrI/AAAAAAAAAlg/QZSZDo-1ygQ/s640/shaved+edge+for+doors.jpg" /></a></div><br />We then needed to decide how many slats to put in each door panel. We took a look at 5 slats in the below picture but felt it wouldn't be airy enough for Ryan and would be frustrating for him to look through:<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-mihpXPq_zl4/UuO1xD6SHZI/AAAAAAAAAkY/mQyOUYZ6WV0/s1600/photo+1+(3).JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-mihpXPq_zl4/UuO1xD6SHZI/AAAAAAAAAkY/mQyOUYZ6WV0/s320/photo+1+(3).JPG" /></a></div><br />We ended up going with 3 slats in the middle. Here you can see the detail and hard work my Dad did on the doors as he had to inset the slats into the frame - talented man I tell you!<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-DJd71ydojMs/UuO1UmiOqiI/AAAAAAAAAj4/d2xESPHFt_c/s1600/IMG_00002277.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-DJd71ydojMs/UuO1UmiOqiI/AAAAAAAAAj4/d2xESPHFt_c/s320/IMG_00002277.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-TLFVzWnioIg/UuO1WRqCWNI/AAAAAAAAAkA/fk3pibRftXA/s1600/IMG_00002279.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-TLFVzWnioIg/UuO1WRqCWNI/AAAAAAAAAkA/fk3pibRftXA/s320/IMG_00002279.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-oF9K5jQk5EI/UuO1XkPyjYI/AAAAAAAAAkI/ukdTUQmTniI/s1600/photo+(1).JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-oF9K5jQk5EI/UuO1XkPyjYI/AAAAAAAAAkI/ukdTUQmTniI/s320/photo+(1).JPG" /></a></div><br />All painted!<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-GN6SgAjnUMs/UuO2hdeBLsI/AAAAAAAAAk4/Uat0z29ctfs/s1600/photo+1+(4).JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-GN6SgAjnUMs/UuO2hdeBLsI/AAAAAAAAAk4/Uat0z29ctfs/s320/photo+1+(4).JPG" /></a></div><br />In order to keep the bi-fold style doors firm against the frame (we thought up of every possible solution) my Dad contacted a local magnet distributor. He explained what he was working on and he offered up a couple of magnets to 'test run'. The first were a touch too weak and the other's were a touch too strong! I mean really strong! It's actually so strong that my Dad had to reinforce the edge of the doors with steel for when we tugged on the doors to open them. The steel was also painted to match the frame of the bed.<br /><br />Before you look at the next picture I need to explain it! While the bed was coming to the end of it's completion I decided to test Ryan in his crib by taking off the lattice. I wanted to see if he was still keen on getting his legs wedged in between the slats. Sure enough he was and one of the last times he did it he was really REALLY stuck. We're talking screams so loud I thought for sure he had broken his leg. The bruising that was caused wasn't pretty. Funny enough this happened just before I was heading over to my parents place for one last look at the bed before it was dismantled and due to be brought over within the next few days. I told my parents what happened and we realized that we had to come up with something to keep him even safer - oh this kid - he's lucky he's so cute! Lol... We thought of acrylic, some form of mesh, anything! We decided to keep costs nice and simple and used the lattice that had been on Ryan's crib. <br /><br /><b>By the way I need to add that my parents absolutely refused money at all for this bed - this was their gift to us and Ryan and my goodness we couldn't have asked for anything more amazing! We were then worried about the cost of a really good mattress for him and thankfully my wonderful in laws took care of that for us! </b><br /><br />Next problem was that the lattice was white. It wasn't safe to paint and the brown colours that are out there in this type of material wouldn't match the frame. Since the white is SO white against a very dark brown frame I decided to work with that. To me it kind of resembled a hockey net - or at least I felt that I could make it look like a hockey net! So we went with a hockey theme - pretty sure Jeff was pretty pumped about that idea as my original idea was to make the bed look like a railway crossing and to have the "I think I can, I think I can..." (from the Little Engine That Could) saying above the bed. <br /><br />Below is the final product before it goes in his room and get's "dressed":<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-paIldx0VWDM/UuO3V4uAz9I/AAAAAAAAAlI/AXKWuVzOvGY/s1600/photo+(3).JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-paIldx0VWDM/UuO3V4uAz9I/AAAAAAAAAlI/AXKWuVzOvGY/s320/photo+(3).JPG" /></a></div><br />This is all a VERY simplified version of all the work my Dad out into this bed and the combined thoughts of myself, Jeff and both my parents. As my Dad said "things have to be thought of 65 times when it comes to Ryan". He's right! I'm not sure how many times we thought we were coming to the end and then would say "oh, wait, nope that won't work or that has to be modified because it won't work for Ryan"!<br /><br />Once my Dad was done the construction of the bed I went to work on "hockeying it up"! It was so fun! I created a goalie crease out of blue bath mats, sewed them together then added red Christmas ribbon around the edges. His old crib bumpers were cut and sewed to fit the new bed and vinyl covers were then made. Goalie pads were purchased at Target and the helmets came from the place my Dad volunteer's at as well as from one of my nephew's. Then I wanted a little something extra above the bed and thought "Ryan's Revenge" sounded like a cool hockey team name. I downloaded the Bauer hockey font and created a stencil in Word. My Dad then took that stencil and created the letters out of wood. This created an awesome sign above his bed - complete with a night light puck which is attached to the sign and looks as if it is cracking through the sign! <br /><br />Here is the absolute final product! We LOVE this bed so much and are so incredibly appreciative of my Dad and all of his hard work. He put blood, sweat and I'm sure at times a few tears into this project. If you know my Dad he builds things to perfection - for his special and amazing little grandson this bed had to be and IS above and beyond perfection!<br /><br /><a href="http://4.bp.blogspot.com/-S_5AaBJkqrg/Uw3-B_e15UI/AAAAAAAAAmc/PXd87Q482Yo/s1600/IMG_20140226_083242.jpg" imageanchor="1" ><img border="0" src="http://4.bp.blogspot.com/-S_5AaBJkqrg/Uw3-B_e15UI/AAAAAAAAAmc/PXd87Q482Yo/s400/IMG_20140226_083242.jpg" /></a><a href="http://3.bp.blogspot.com/-HcezfAs7GQU/Uw3-CUQqRYI/AAAAAAAAAmg/SSivPqPo2Cc/s1600/IMG_20140226_083333.jpg" imageanchor="1" ><img border="0" src="http://3.bp.blogspot.com/-HcezfAs7GQU/Uw3-CUQqRYI/AAAAAAAAAmg/SSivPqPo2Cc/s400/IMG_20140226_083333.jpg" /></a><a href="http://1.bp.blogspot.com/-2tyDV_CXaIs/Uw3-EZvmaSI/AAAAAAAAAms/49wfrAwPp_s/s1600/IMG_20140226_083359.jpg" imageanchor="1" ><img border="0" src="http://1.bp.blogspot.com/-2tyDV_CXaIs/Uw3-EZvmaSI/AAAAAAAAAms/49wfrAwPp_s/s400/IMG_20140226_083359.jpg" /></a><a href="http://4.bp.blogspot.com/-E7qs0W_QyOQ/Uw3-F16IQtI/AAAAAAAAAm0/NhHnn8jUQnc/s1600/IMG_20140226_083432_edit+(1).jpg" imageanchor="1" ><img border="0" src="http://4.bp.blogspot.com/-E7qs0W_QyOQ/Uw3-F16IQtI/AAAAAAAAAm0/NhHnn8jUQnc/s400/IMG_20140226_083432_edit+(1).jpg" /></a><a href="http://4.bp.blogspot.com/-wrfZ9tMtuFk/Uw3-KUoeGVI/AAAAAAAAAm8/hXo9h4O7w8U/s1600/IMG_20140226_084521.jpg" imageanchor="1" ><img border="0" src="http://4.bp.blogspot.com/-wrfZ9tMtuFk/Uw3-KUoeGVI/AAAAAAAAAm8/hXo9h4O7w8U/s400/IMG_20140226_084521.jpg" /></a><a href="http://4.bp.blogspot.com/-2WpMSsg5VUA/Uw3-owPRYsI/AAAAAAAAAnE/kLvO4TgHKWw/s1600/IMG_20140226_083219.jpg" imageanchor="1" ><img border="0" src="http://4.bp.blogspot.com/-2WpMSsg5VUA/Uw3-owPRYsI/AAAAAAAAAnE/kLvO4TgHKWw/s400/IMG_20140226_083219.jpg" /></a><a href="http://1.bp.blogspot.com/-he0FPjrW1bo/Uw4YK4nCW1I/AAAAAAAAAns/QJ61oEGVXqo/s1600/IMG_20140226_112046.jpg" imageanchor="1" ><img border="0" src="http://1.bp.blogspot.com/-he0FPjrW1bo/Uw4YK4nCW1I/AAAAAAAAAns/QJ61oEGVXqo/s400/IMG_20140226_112046.jpg" /></a><a href="http://4.bp.blogspot.com/-fzAa2JW54fo/Uw4YMU513SI/AAAAAAAAAn0/sJ-CzO8rChk/s1600/IMG_20140226_112508.jpg" imageanchor="1" ><img border="0" src="http://4.bp.blogspot.com/-fzAa2JW54fo/Uw4YMU513SI/AAAAAAAAAn0/sJ-CzO8rChk/s400/IMG_20140226_112508.jpg" /></a><br /><br /><br />Jen Quinlan-Bangildhttp://www.blogger.com/profile/13468233369422016017noreply@blogger.com3tag:blogger.com,1999:blog-847681409438089823.post-18890964522721553742014-01-02T10:37:00.002-08:002014-01-02T10:37:53.934-08:00PT, EEG, IEP - oh my!!!Happy New Year everyone!<br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-vxI2pxathhw/UsWwAqU05WI/AAAAAAAAAfc/zvJJZb62L24/s1600/IMG_4296crop.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-vxI2pxathhw/UsWwAqU05WI/AAAAAAAAAfc/zvJJZb62L24/s400/IMG_4296crop.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-WzKbZ7rcSF8/UsWwD0XlVHI/AAAAAAAAAfk/y6k0nVeAJZY/s1600/IMG_4310crop.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-WzKbZ7rcSF8/UsWwD0XlVHI/AAAAAAAAAfk/y6k0nVeAJZY/s400/IMG_4310crop.jpg" /></a></div>January is finally here. What that means for things in this house is that I can now register Ryan for junior kindergarten. Will I? Probably. Will I send him? I have no idea. The start of the new school year is 8 months away. Where will Ryan be at that point? Walking more? Talking at all? Will we have found a means for some form of communication? For any parents sending your child off to school - where you aren't there to protect them from the big bad world is a scary feeling. Trying to wrap my head around registering my 40" and 36lb "infant" for JK isn't sitting well with me at all.<br /><br />This morning I printed off the 4 page form and as I sat at the kitchen table feeding Ryan his breakfast I completely and totally fell apart. I very rarely stop to think about our life situation. There's no need as it's our normal. When I realize that it's not normal are days like this. This morning was tough. It takes a lot for me to allow tears to come in front of the kids (or better yet for me to be so powerless to stop them) but I was just feeling so overwhelmed with a rush of thoughts of fear and stress there was little I could do. I quickly took to social media and posted some questions in a couple of my special and even non-special needs groups. I was flooded with lots of support and information from those who have been there or are about to go through the school thing themselves. I have never met any of the people who have offered me support over the years including today and likely never will but I am SO incredibly grateful to them all. I gripe and complain about technology and the pain in the a** of it all...but in all honesty things like the power of social media have offered me a place to go. A place full of people like me. A place of comfort and acceptance and a place full of information from those who are a little further along in their journey than I am. I like to think too that in the 3 years we've been living this "norm" that I have been able to help the odd person here and there.<br /><br />When it comes to sending Ryan to school I have so many understandable doubts and concerns. He is mentally, physically and visually impaired. How can I possibly send him off into the world without me??? I can't. How can I ever trust a stranger to care for him and keep him safe the way myself and his family do? Maybe I'll feel different in 8 months. Maybe... <br /><br />2011, 2012 and 2013 were spent learning and living in abbreviated terms like PT, SLP, EIS, EEG, MRI, ERG and so many others. It looks like 2014 will be spent learning about SERT (Special Education Resource Teacher), EA (Education Assistant), IEP (Individualize Education Plan) and probably lots of others I don't even know about yet! I've been dreading the flip into this part of the special needs world. I don't HAVE to send him...kindergarten is optional. He might benefit from being around other kids or it might be the worse thing for him. I don't know! I don't know! I don't know! <br /><br />And the roller coaster continues...Jen Quinlan-Bangildhttp://www.blogger.com/profile/13468233369422016017noreply@blogger.com0tag:blogger.com,1999:blog-847681409438089823.post-79016378339184440302013-11-12T08:52:00.000-08:002013-11-12T08:52:10.774-08:00I've finally met my son!‎<div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-sxhBYdPqQN4/UoA1Bvek9EI/AAAAAAAAAe8/0YGQW6c_gow/s1600/Ryan's+Ireland+jacket_edit.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-sxhBYdPqQN4/UoA1Bvek9EI/AAAAAAAAAe8/0YGQW6c_gow/s400/Ryan's+Ireland+jacket_edit.JPG" /></a></div><br />I'm not sure who I was kidding when I said to myself, "Sure I can maintain a regular and active blog plus be a Mom to 2 kids under the age of 4 years"! HA - perhaps I was a little delusional but hey sometimes that's one of the best ways to get through life right! RIGHT?!?!<br /><br />So I unintentionally took the summer (and half of fall) off from blogging. The whole time I swore to myself that I would get back at it once Quin started kindergarten. I figured I'd have a couple of hours twice a week of a little down time while Ryan napped and Quin was in school - perfect time to blog! Or perhaps a perfect time to do a little cleaning, organizing, de-cluttering, fold a mountain of laundry - and yes a little time to sit down to catch up on one of my PVR'd shows *guilty grin*! In between all that though I was changing a poopy bum. Ryan has taken to pooping mainly around nap time which of course either wakes him up or keeps him from falling asleep because he's waiting for it to come! This kid loves to poop let me tell ya! But he also LOVES his down time so even if he's not napping he's at least chilling in a dark room resting his vision and his body which is very much needed when you wake for the day between 5:30am and 6:30am.<br /><br />It has been over 5 months since my last post - yikes! Sorry to those that follow Ryan's story! I've been super low energy due to (without this sounding like a pity plea) being a special needs Mom. My 37 year old body feels more and more like a 97 year old body. My back, hips and ankles have all been feeling the strain of lifting and carrying Ryan's 36lbs...40" body. I've been checked out and xray'd but nothing showed up with is good but frustrating because I'd like an answer/solution to my aches and discomfort. Thankfully Ryan is starting to get a little more mobile. Which you can see here - it is so incredible - I really have no words so just watch!!!<br /><iframe width="560" height="315" src="//www.youtube.com/embed/cxjisSk4O7Y?list=UUu5oap75f2u_Cs0oKBFkmvQ" frameborder="0" allowfullscreen></iframe><br /><br />This here he did just a few weeks ago - AMAZING! Once he was upstairs he climbed up onto the stool in the bathroom Quin uses to brush her teeth and wash her hands! Crazy!<br /><iframe width="560" height="315" src="//www.youtube.com/embed/nilF6Kg8x0o?list=UUu5oap75f2u_Cs0oKBFkmvQ" frameborder="0" allowfullscreen></iframe><br /><br />When I left this blog off last time Ryan was going through a screaming, sad, angry phase. That in total lasted about 5 weeks. Once it resolved he managed to get through the summer months his typical happy, easy going self. He even started to make some new sounds!<br /><iframe width="560" height="315" src="//www.youtube.com/embed/7eCDAgjbKWg?list=UUu5oap75f2u_Cs0oKBFkmvQ" frameborder="0" allowfullscreen></iframe><br /><br />Unfortunately, in mid September into early October he went through another very bad fit. This one lasted only 3 weeks but it was 3 weeks of constant screaming and sadness. The ER chalked it up to poop back up which the pediatrican disagreed with - so fun when doctor's "agree" on things...ggrrrr! Myself and those close to him (aka family and his therapists) feel he went through a growth spurt. He definitely felt bigger but what was scary for me was that he became quite floppy and much more unbalanced and uncoordinated than usual. I was so afraid it was his brain going batty! I'm certain though it was a spurt as (knock on wood) he's been awesome since!<br /><br />Since the last post Ryan has had 2 EEG's. Things like the below video is what keeps happening. To some it may look like "normal" behaviour. To other's who know epilepsy may say "huh, yup for sure that's seizure activity". His EEG's have come back clear of seizures but he's never had these episodes while hooked up so it's very frustrating not knowing what they are:<br /><iframe width="420" height="315" src="//www.youtube.com/embed/IdPrekb1blE" frameborder="0" allowfullscreen></iframe><br /><br />The good thing is that he hasn't regressed. At least not physically as the walking video at the beginning of my post confirms. What is worrying me though is that he hasn't babbled like he did above in almost 2 months now. He seemed to be on a roll but now there is nothing. What I'm hoping is that his brain is so busy learning all these new physical skills like balance, walking etc...that it needs to take a break from the verbal part for a bit. Another factor could be that his left tube came out of his ear and his ear drum is slowly filling back up with fluid which could be affecting his hearing which could affect any noises he wants to make. We see ENT again early in December to see how things are looking (his right tube is half out as well). <br /><br />What has been amazing and has also kept me from freaking out too much is that he is becoming much more social. No matter where I am, Quin is or Jeff is he always seems to come to us. What I mean is that I could be in the kitchen doing something and he'll scoot right into the kitchen to "say hello". He'll just sit there at LOOK at me...it's so very surreal! I finally feel after all this time that I'm finally meeting my son. Let me tell you - it's an intense thing to experience.<div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-sd7sCxSqcI0/UoA-8qG9sEI/AAAAAAAAAfM/wuF8N5rcGyw/s1600/IMG_00001938.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-sd7sCxSqcI0/UoA-8qG9sEI/AAAAAAAAAfM/wuF8N5rcGyw/s400/IMG_00001938.jpg" /></a></div>Jen Quinlan-Bangildhttp://www.blogger.com/profile/13468233369422016017noreply@blogger.com0tag:blogger.com,1999:blog-847681409438089823.post-56576573197713344782013-06-05T13:10:00.002-07:002013-06-05T13:10:44.772-07:00Ryan's RageOh me...oh my...my boy sure can cry! :o( I hate to start this post off all doom and gloom but it's really been a rough few of weeks for Ryan (and the rest of us). <br /><br />The day after my last post the poor thing was up in the night crying...slept a wee bit then woke screaming around 6:00am and didn't stop until 8:30am. The reason he stopped? He passed out cold. From then on he would scream and pass out off and on all morning long. It was so sad. If he wasn't being held he would just fall asleep in the middle of the floor. By 11:30am my Mom and I were on the way to the ER with him while Jeff kept Quin company at home. When we got to the hospital I noticed his ears were leaking pinky coloured fluid. :o( Oh the poor thing - it was an ear infection (confirmed by the best ER doc we've had to date)! Since his tummy was still suffering the effects from the Biaxin (antibiotic) from his bronchitis a couple of weeks prior it was decided to just put him on some topical antibiotic ear drops. Thankfully they seemed to do the trick!<br /><br />In the middle of all of this going on I received the results of his blood work from mid April and was told his iron levels are still quite low...the lowest they had ever been. His pediatrician did up some calculations and found that he is only getting 1/2 the amount of iron supplement he should be - YIKES! That had to be upped which of course means an increase in poop issues as iron supplements cause constipation - ugh as if he doesn't have enough poop troubles due to his hypotonia! Along with the iron increase it was also suggested to start him up on a Vitamin D supplement (in hopes of boosting his seemingly fragile immune system). Well after about a week of the iron increase he started to feel pretty uncomfortable so I backed off his supplement a little bit - seems to be helping.<br /><br />On the holiday Monday, May 20th I put Ryan down for his afternoon nap when I noticed he was stepping, almost climbing on his bumpers. Hmmmmm....that's not good! Little bugger would just giggle when I said "Ryan, no!". I squished them down as far as I could then went to go tell Jeff what a goof he was being. I then turned on the monitor and saw that Ryan had moved to the other end of his crib and was leaning and wiggling along the edge of the top rail...before I could even THINK of saying "uh oh" he was over the edge and there was a sickening thud that very quickly followed. I quite honestly think my feet grew wings as I flew up the stairs...as I was running he started screaming (never been so happy to hear him screaming)!!! When I got to him he was flat on his back just wailing. Oh the poor thing he was so scared. He didn't seem hurt although there was a bit of blood in and around his mouth - nothing serious seemed amiss. Unfortunately, since his fall he hasn't been himself.<br /><br />During that first week after his fall I had Ryan at our family doctor once and the pediatrician 3 or was it 4 times...I can't remember. I had been in touch with the neuro nurse as well and even got in to see the neurologist himself. Everything seemed fine with him physically. Mentally and emotionally though he was an absolute disaster! The first week after the fall he was sad and only wanted to be held and cuddled. The second week and up to present day has been horrific. He has been having some serious serious rage issues! It's like he went to bed Ryan and woke this crazy, angry, out of control child who I've never met! The neuro said it could be behavioural (due to all of his conditions) or it could be an extreme case of the "terrible two's". Even though Ryan functions at an infant level there are parts of his brain that are very much a 2.5 year old. Since he can't verbalize his frustrations he could be acting out the 2's in a bit of a more severe form. It's so hard to say and so hard to experience. Jeff and I are praying it's just a phase - a short one at that because it's been scary and at times dangerous for Ryan and for anyone handling him. Even poor Quin got knocked around a bit by him. :o(<br /><br />What's frustrating about how he's been feeling (aside from the fact that it's so heartbreaking not being able to fix what is wrong) is that he hasn't been able to make any big developmental gains like he had been doing back in April. He is currently 30% through his Vigabatrin wean but due to feeling so crummy and moody he's just not wanting to do much at all.<br /><br />Cross your fingers for Ryan and all of us that this is just a phase - if not I may just have to rename this blog "Ryan's Rage"! :o(<br />Jen Quinlan-Bangildhttp://www.blogger.com/profile/13468233369422016017noreply@blogger.com0tag:blogger.com,1999:blog-847681409438089823.post-70525150148180205552013-05-04T12:57:00.001-07:002013-05-04T12:57:23.179-07:00One small step for Ryan ... One giant leap in his development!<a href="http://4.bp.blogspot.com/-f9I9QqsuehE/UYVhAOmvZPI/AAAAAAAAAeM/5CLdcKWYZII/s1600/IMG-20130424-01465.jpg" imageanchor="1" ><img border="0" src="http://4.bp.blogspot.com/-f9I9QqsuehE/UYVhAOmvZPI/AAAAAAAAAeM/5CLdcKWYZII/s320/IMG-20130424-01465.jpg" /></a><br />Alrighty, so it's been 2 months since Ryan's Vigabatrin wean was started. I apologize for the extreme delay in updating this blog - there have been lots of ups and downs and sick little ones ... Ryan is working on his 2nd cold in 1 month, Quin has an ear infection, I am at the tail end of a cold that started 2 weeks ago and Jeff woke this morning with a sore throat - the beginnings of the dreaded "man cold" - LOL! So it's been hard to get some computer time in! Let me give you the low down on how the first 24 hours of Ryan's wean went...<br /><br />The night before I slept like horribly...I mean I sleep like "bleep" normally anyway (a trait my Mom passed down to me - lol) but this night in particular was extra crummy. I got up that morning and had some breakfast and a coffee then went to get Ryan. As soon as I looked down at him in the crib I started falling apart...when I picked him up I held him extra tight, looked up and said a little pray - down came the tears. I'll be honest, when I pray I really have no idea who I'm praying to and I don't know who you all pray to either...could be that guy they call God, a Buddha, the tooth fairy or Santa - whoever it is just keep it up - PLEASE! :o) So Ryan and I went downstairs...Jeff took one look at my face and just shook his head. I asked, "Do we have to start today?". His response was a quick "YES". I swear it took everything I had not to suck Ryan's usual morning dose up into the syringe...but I did it and this boy seems to be taking off! Here's a little run down on his accomplishments in the last couple of months.<br /><br />So the wean started on March 3rd. On <i>March 14th</i> I was changing Ryan when I saw him looking at me. I don't mean he was just looking in my direction and seeing me...he was REALLY looking at me. I can't explain in words what exactly it felt like but I saw something different in him that made my heart skip a beat and produced instant tears. I would say it was this day when I first noticed the Vigabatrin "fog" lifting. <br /><br />On <i>March 23rd</i>, Ryan pulled to stand against "his" wall (see below - picture was taken a split second after it happened) - very impressive because he did this with nothing to grab onto! On this same day he first cruised along the couch a little bit. Just a couple of steps but holy smokes was it ever neat!<br /><a href="http://4.bp.blogspot.com/-ln1UWVORGhU/UWiD6pXpphI/AAAAAAAAAdI/gnvKkVeRWCM/s1600/IMG-20130323-01191.jpg" imageanchor="1" ><img border="0" src="http://4.bp.blogspot.com/-ln1UWVORGhU/UWiD6pXpphI/AAAAAAAAAdI/gnvKkVeRWCM/s320/IMG-20130323-01191.jpg" /></a><br /><br /><i>March 27th</i>, was Ryan's 6th sedated ERG in 1.5 years...ick! I hate that he has been sedated so many times but it's necessary to check for retinal toxicity. Here he is the morning I woke him at 5:00am to give him his meds:<br /><a href="http://2.bp.blogspot.com/-CVge8Vdzqsc/UWiC_ZCLhgI/AAAAAAAAAdA/rRB1Ns_3H6I/s1600/IMG-20130327-01228.jpg" imageanchor="1" ><img border="0" src="http://2.bp.blogspot.com/-CVge8Vdzqsc/UWiC_ZCLhgI/AAAAAAAAAdA/rRB1Ns_3H6I/s320/IMG-20130327-01228.jpg" /></a><br /><br />On <i>March 31st</i>, while at my sisters place for Easter dinner my Dad was sitting on the couch with Ryan when my Mom called for me to come into the room. First thing that came to my mind was, "Please don't tell me he's having head bobs (spasms)!!!". Thankfully what I saw was something much MUCH better! My Dad was tapping on a pillow with his hand and Ryan was copying him!!! Not only that but he was taking turns! This was HUGE!!! Here's a little video for proof! :o)<br /><iframe width="560" height="315" src="http://www.youtube.com/embed/sHxGfKVWdhc" frameborder="0" allowfullscreen></iframe><br /><br />On <i>April 1st</i>, I put Ryan in the bath fully expecting him to do his usual facing an end, corner or opposite wall of the tub. Instead of doing his usual "ignore Mommy" thing he turned himself around and faced me the entire time he was in there!!! I couldn't believe it...it really was the strangest experience ever! The next night I brought my phone into the bathroom with me so I could take pictures just in case he did it again...he did and here he is:<br /><a href="http://3.bp.blogspot.com/-TVyaZb_7Yzw/UWiA4jEkedI/AAAAAAAAAcg/6JiFRDm03U4/s1600/IMG-20130402-01263.jpg" imageanchor="1" ><img border="0" src="http://3.bp.blogspot.com/-TVyaZb_7Yzw/UWiA4jEkedI/AAAAAAAAAcg/6JiFRDm03U4/s320/IMG-20130402-01263.jpg" /></a><a href="http://3.bp.blogspot.com/-qEzU7yTARjo/UWiBPXrFl7I/AAAAAAAAAco/FzZgfFSzCCQ/s1600/IMG-20130402-01268.jpg" imageanchor="1" ><img border="0" src="http://3.bp.blogspot.com/-qEzU7yTARjo/UWiBPXrFl7I/AAAAAAAAAco/FzZgfFSzCCQ/s320/IMG-20130402-01268.jpg" /></a><a href="http://3.bp.blogspot.com/-Z_-GxWPjRzw/UWiBVcWVCjI/AAAAAAAAAcw/70XxbyFvHVE/s1600/IMG-20130402-01279.jpg" imageanchor="1" ><img border="0" src="http://3.bp.blogspot.com/-Z_-GxWPjRzw/UWiBVcWVCjI/AAAAAAAAAcw/70XxbyFvHVE/s320/IMG-20130402-01279.jpg" /></a><br /><br /><br />The "inch"stones that happened on March 31 and April 1 say to me that he's ready and trying to communicate in his own way...this is VERY big for Ryan and all of us!<br /><br /><b>Now for the big news!!! On <i>April 4th</i>, at the end of Ryan's PT session his therapist walked him over to me (he does assisted walking with the therapists (or my) hands on knees/thighs and sometimes as low as his ankles). For his very last step his PT completely let go of him and he took that last step all by himself right into my arms!!! Now as I mentioned at the beginning of this post I'm a pretty crummy sleeper...I was also battling a terrible headache on this day so while I saw him take that last step on his own I did need verification. I sent a quick note off to his PT asking if he really did it and bless her for getting right back to me and assuring me that she did let go and it was all him!!!</b><br /><br />Here is a super short video of Ryan cruising along our back window (his favourite place to hang out):<br /><iframe width="560" height="315" src="http://www.youtube.com/embed/DvSREB5t46o" frameborder="0" allowfullscreen></iframe><br /><br />On <i>April 5th</i>, Ryan came down with a cold that hit him pretty hard. His cough started the day after and while this may make me sound like a horrible person I loved listening to him cough! Normally when he coughs its a weak little half cough. He's never been able to give it all he's got which I think is part of the reason his colds always settle in his chest. This time around though holy smokes he's been coughing a real big boy cough...full on hard getting all the junk out cough! Vigabatrin also causes decreased muscle tone so maybe just maybe he's getting a bit stronger too during this wean! What's crazy is that we're seeing all these changes and progress and his dose has only been lowered very minimally. Could his development lately be just him getting older and maturing or is the wean really making that big of a difference? Definitely a bit of both I'd say but I have no doubt that the lowered meds are for sure having a big impact on his beautiful brain! Unfortunately, the cold developed into bronchitis so he went back on antibiotics. :o( Since he had just recovered from pneumonia (in January) his doctor put him back on the heavy duty antibiotics and yikes he really didn't do too well on them this time. He got a funny tummy, lost his appetite and started having some noticeable (what I felt) seizure like activity. He had lots of body jerks and shuddering, twitching, sharp abrupt eye and head turns. At times he was really out of it - dazed, zoned out. When he would go through all of this he would whimper and also seem to get really tired and worn out. I took some video and sent off a few e-mails to his neurologist each one was met with the same answer - "I don't see anything concerning". Ugh... I put in a request to him for an EEG making the point that I felt Ryan should be monitored a little closely mid wean (and of course he'll get another EEG post wean). He agreed (or he just wants to shut me up) and will be putting in a requisition for a non-urgent EEG.<br /><br />On <i>April 11th</i>, Ryan sucked out of a straw during his speech therapy session!!! He didn't just do it once - he did it a bunch of times!!! It was SO neat!<br /><br /><b>On April 21st, my sweet, sensitive and oh so feisty Quin turned 4 years old!!!</b> The picture of her eating her cereal I took at exactly 7:49am - the time she offically graced this crazy world with her beautiful presence!<br /><a href="http://4.bp.blogspot.com/-E2XY6q5jjSw/UWiCGCzZPuI/AAAAAAAAAc4/XKdXRAu4ORY/s160-0/003.jpg" imageanchor="1" ><img border="0" src="http://4.bp.blogspot.com/-E2XY6q5jjSw/UWiCGCzZPuI/AAAAAAAAAc4/XKdXRAu4ORY/s320/003.jpg" /></a><br /><a href="http://2.bp.blogspot.com/-ECKciE3SzKQ/UYVfzy9jzVI/AAAAAAAAAd0/IASXNGPrK7o/s1600/IMG-20130418-01431.jpg" imageanchor="1" ><img border="0" src="http://2.bp.blogspot.com/-ECKciE3SzKQ/UYVfzy9jzVI/AAAAAAAAAd0/IASXNGPrK7o/s320/IMG-20130418-01431.jpg" /></a><a href="http://4.bp.blogspot.com/-nG7Jed6Y9es/UYVgMbrleAI/AAAAAAAAAd8/O6IjPlU9ExE/s1600/010.jpg" imageanchor="1" ><img border="0" src="http://4.bp.blogspot.com/-nG7Jed6Y9es/UYVgMbrleAI/AAAAAAAAAd8/O6IjPlU9ExE/s320/010.jpg" /></a><a href="http://1.bp.blogspot.com/-RErjHxl75oM/UYVgsdkeg2I/AAAAAAAAAeE/i_MbHPPZfhE/s1600/IMG-20130502-01557.jpg" imageanchor="1" ><img border="0" src="http://1.bp.blogspot.com/-RErjHxl75oM/UYVgsdkeg2I/AAAAAAAAAeE/i_MbHPPZfhE/s320/IMG-20130502-01557.jpg" /></a> This girl I tell you is really something. I'm sure I've said before how its difficult of course to explain to her what is going on with Ryan and really there's no need to bombard her with things to think and worry about... She definitely is becoming much more understanding of what Ryan is able and not able to do. As you can see in the below video she loves being his little helper. There are times too when she'll rush over to him if/when he falls. Still though in keeping with her childish innocence and desire to have a sibling to play and talk to she does still ask "Is Ryan going to talk today?" or "When can he chase me?"<br /><iframe width="560" height="315" src="http://www.youtube.com/embed/53s5x2N2X70" frameborder="0" allowfullscreen></iframe><br /><br />On <i>April 24th</i>, I noticed Ryan was making some very definite "de" and "be" sounds!!!<br /><br />On <i>April 25th</i>, we flipped Ryan's car seat around so that he is now forward facing - a big step for my hypotonic little one! He is so incredibly long that it was just getting ridiculously uncomfortable for him to remain rear facing!<br /><a href="http://2.bp.blogspot.com/-H-kTAWvxwp0/UYVcJ1bm_II/AAAAAAAAAdk/duosNMAEucI/s1600/IMG-20130425-01473.jpg" imageanchor="1" ><img border="0" src="http://2.bp.blogspot.com/-H-kTAWvxwp0/UYVcJ1bm_II/AAAAAAAAAdk/duosNMAEucI/s320/IMG-20130425-01473.jpg" /></a><br /><br />On <i>April 30th</i>, he took 1.5 solo steps during PT!!!<br /> <br /><i>May 3rd</i>, Jeff and I had an appointment to get Ryan's IBI assessment results - they were as we expected - <b>DENIED</b>. There was a whole huge list of stuff we went over and talked about. Basically what it comes down to (for right now at least) is that they require the child to at least function at the level of a 1 year old (which our little cutie does not - YET). He has been deferred for 1 year and will be reassessed. The good news is that he doesn't lose his spot on the wait list (which is about 3 years long). Where does that leave us now? He is still eligible for the ABA therapy - much less intense but still not something he could cognitively handle at this point. There of course is still a wait list for this but we could go private if we choose to. For now we have decided against additional therapy - at least with regards to the autism diagnosis. We will continue with what we're doing but at more "intense" level (at home - aka. free therapy) and try to bring him along a little more ourselves first. I will however be making some calls next week just to see where about's he is on the wait list for ABA.<br /><br />Along with the news on this day, Ryan came down with another cold which included another horrible cough and this time a fever. Plus, his appetite is once again disappearing. Ugh... The day before he woke with his full blown cold I had taken him for a chest xray as he was still "purring" a lot - thankfully it came back clear! Hopefully this cold goes away quickly and Ryan can get back to feeling great again.<br /><br />It's all been a very very exciting couple of months but the terror I was feeling watching him have some possible break through seizures definitely keeps me grounded (aka realistic)!<br /><br />Thank you so much for following our little journey and again I really apologize for the delay in updates!<br /><br /><a href="http://2.bp.blogspot.com/-FFo-UGMAK9Y/UYVn3Iuy9iI/AAAAAAAAAec/99HWczSSq58/s1600/IMG-20130502-01552crop.jpg" imageanchor="1" ><img border="0" src="http://2.bp.blogspot.com/-FFo-UGMAK9Y/UYVn3Iuy9iI/AAAAAAAAAec/99HWczSSq58/s320/IMG-20130502-01552crop.jpg" /></a><a href="http://4.bp.blogspot.com/-EN9YIf7hcSU/UYVn6AlPF4I/AAAAAAAAAek/z4WS6ZXY_r4/s1600/IMG-20130426-01512crop.jpg" imageanchor="1" ><img border="0" src="http://4.bp.blogspot.com/-EN9YIf7hcSU/UYVn6AlPF4I/AAAAAAAAAek/z4WS6ZXY_r4/s320/IMG-20130426-01512crop.jpg" /></a><br /><br />Please continue with your good thoughts, prayers and crossed fingers that he remains seizure free (and healthy).Jen Quinlan-Bangildhttp://www.blogger.com/profile/13468233369422016017noreply@blogger.com0tag:blogger.com,1999:blog-847681409438089823.post-81759569707064391072013-03-02T06:46:00.001-08:002013-03-02T06:48:23.928-08:00Diagnosis #4Sometimes it really sucks being right all the time!!! Lol.... Okay so maybe I'm not right ALL the time but boy oh boy when it comes to that gnawing anxiety I get whenever Ryan is doing awesome - I just know the "bleep" is going to hit the fan and sure enough the day Jeff left for California for 1 week Ryan started having some serious teething issues thanks to that "bleeping" final 2 year molar!!! He was fairly miserable throughout the day but the real heavy screaming he saved for the night time (generally right around the time I found the sweet spot in bed and got all cozy). <br /><br /><a href="http://2.bp.blogspot.com/-mB3WY9SHljc/UTIO4ejYCTI/AAAAAAAAAcQ/erElrW9mX70/s1600/IMG-20130206-00912.jpg" imageanchor="1" ><img border="0" src="http://2.bp.blogspot.com/-mB3WY9SHljc/UTIO4ejYCTI/AAAAAAAAAcQ/erElrW9mX70/s320/IMG-20130206-00912.jpg" /></a><br /><br />Nothing I mean NOTHING gave him any relief unless of course I was holding and cuddling him. Didn't matter to him....if it was 10pm, 1am, 2:30am, 4am...you get the picture. Advil and Tylenol just wouldn't cut it - Momma's cuddles on the other hand - well they must be magical! Hahaha... Wouldn't you just know it the first night Jeff was home he was pretty much back to normal and slept through the night for the first time in a week! *sigh*<br /><br />As typical with Ryan once he was over his pain and trouble he was back to amazing us with his tricks! He can bum scoot so easily now – it’s SO amazing to watch! His pulling up to stand is off the charts!<br /><br />What I love most about his developmental explosion in the past few weeks is watching his face and listening to his excited squeals! He knows darn well what he's doing and man is he ever proud of himself - that alone makes my heart so happy! Just listen to this:<br /><iframe width="560" height="315" src="http://www.youtube.com/embed/S5V-j-uODHI" frameborder="0" allowfullscreen></iframe><br /><br />And here he is again same day actually turning around in his crib – so awesome!<br /><iframe width="560" height="315" src="http://www.youtube.com/embed/BPd_KyMHjE0" frameborder="0" allowfullscreen></iframe><br /><br />So that’s the fun and exciting news…here’s the bad news: Ryan has now been put on the autism spectrum. I don’t suppose its bad bad news…it’s certainly not unexpected. Since Ryan was a baby I had been asking his regular pediatrician about diagnosing him with autism. He’s theory was why add another diagnosis to his already long list – what will it change? While I can see his point (and believe me I have the utmost admiration and respect for this doctor)…I don’t agree. What it changes for Ryan is being entitled to additional therapy. This is good and bad. Good of course for Ryan…bad for Quin. I’m already drowning in guilt for the time, effort and energy that goes into Ryan. Quin definitely get’s her special time and is extremely loved and cared for but I just always feel that it’s never enough. I feel that for both of them…God if I could just clone myself or add a few extra days to the week or hours to the day that would be just perfect (I'm sure parents that have "typical" kids feel that too)! Let’s face it…that’s not going to happen.<br /><br />So how did Ryan get put on the spectrum? Well, on Valentine’s Day (of all days to give me the news – geez) Ryan had an appointment with the developmental pediatrician (it’s the 3rd time he’s seen her). She feels that even though he is visually impaired (which comes with its own autistic like traits and characteristics) and developmentally delayed he doesn’t act like he’s “just” VI and DD. Any other child who is VI or DD will still respond to their name, be much more socially interactive, make more eye contact and smile more. Ryan also rocks…a LOT and has some repetitive type behaviours. Appointments like these ones are hard. The doctor observes the child in an environment that is unfamiliar to them for a minimal amount of time and feels they have a diagnosis. While I’m not disagreeing with the ASD thoughts I did feel the need to defend Ryan. I made sure she knew that he does at times respond to his name and things like “bottle” and “up” and “more”. I told her that he will lock on my face from time to time and even smile. I made sure she knew how well he played and explored things. How curious he has become with his surroundings. Perhaps I came off a little strong at times and had a “back off bi*ch” demeanor but hey…I’m his Mom – and as many of you know…you just don’t mess with a Momma! So what additional therapy does this entitle Ryan to? I’m still in the learning process of it all but there is ABA and IBI. <br /><br />***********************************************************<br /><br />Here is what ABA is:<br /><br /><i><b>What is Applied Behavior Analysis?</b><br />Behavior analysis focuses on the principles that explain how learning takes place. Positive reinforcement is one such principle. When a behavior is followed by some sort of reward, the behavior is more likely to be repeated. Through decades of research, the field of behavior analysis has developed many techniques for increasing useful behaviors and reducing those that may cause harm or interfere with learning.<br /><br />Applied behavior analysis (ABA) is the use of these techniques and principles to bring about meaningful and positive change in behavior.<br /><br />As mentioned, behavior analysts began working with young children with autism and related disorders in the 1960s. Early techniques often involved adults directing most of the instruction. Some allowed the child to take the lead. Since that time, a wide variety of ABA techniques have been developed for building useful skills in learners with autism – from toddlers through adulthood.<br /><br />These techniques can be used in structured situations such as a classroom lesson as well as in "everyday" situations such as family dinnertime or the neighborhood playground. Some ABA therapy sessions involve one-on-one interaction between the behavior analyst and the participant. Group instruction can likewise prove useful.</i><br /><br />Here is an explanation of IBI Therapy:<br /><br /><i><b>What is Intensive Behavioural Intervention?</b><br />Children with autism face a number of challenges–poor social interaction skills, communication difficulties and developmental delays. <br /><br />Intensive Behavioural Intervention (IBI) can help some children with autism. It's a structured approach to breaking down the barriers that isolate children with autism from the world around them. <br /><br />What's involved?<br />IBI professionals work with children with autism– either one-on-one or in small groups. They use systematic methods derived from principles of Applied Behaviour Analysis to promote development and change behaviour. Research tells us that IBI should be commenced early because very young children can gain the most from this approach. <br />IBI is intensive. It typically involves between 20 and 40 hours of direct service per week. IBI is individual. Program goals are based on a thorough assessment of each child's unique strengths and needs. IBI is practical. The focus is on developing the skills each child needs for greater independence. <br /><br />Who is eligible for IBI?<br />The program is designed for children with Autistic Disorder or a disorder considered to be towards the more severe end of the autistic spectrum. An assessment by an IBI program provider is required. <br />What role do parents play?<br />Parents are critical to the success of IBI. A parent training component helps parents assist their children in reaching their goals.</i><br /><br />***********************************************************<br /><br />The tricky thing with IBI (from what I’ve been told by the developmental pediatrician) is that if they find Ryan not to be eligible (ie. Not on the spectrum) he will be taken off the wait list and never allowed back on. It’s all still very confusing and overwhelming and I’m not sure I fully understand what is going on or about to take place next. <br /><br />So since we've got that new stress to deal with why not add a little more right! We will be starting <b>Ryan's Vigabatrin wean this Sunday, March 3rd</b>. February 27th was his 18 month anniversary of being on it...standard course of treatment is only 6 months. A typical wean is about 6 weeks. There is absolutely no way in heck that I would wean him that quickly! I have done up a wean schedule that will take just over 10 months (42 weeks) - he will be completely off Vigabatrin just before Christmas. His neuro thinks I'm a little nuts but he also understands and respects my intense need and desire for a record breaking slow wean! As I've mentioned before I am terrified of his horrific Infantile Spasms coming back I am also afraid of new seizures which will no doubt start up once he is off the med. It could be days, weeks or months once he's come off the drug we just don't know. Some who have come off are seizure free for years before something new starts up. Vigabatrin is really only used to treat IS but his neuro does feel that it is also keeping the additional activity at the back of his brain (the occipital lobes) at bay. What makes this new chapter in Ryan's life even more frightening is that both his epileptologist and neurologist want Ryan to go maintenance med free during and post wean. Not the norm when you have a child with symptomatic IS but they are also believers in not over medicating. So we wait and see what happens and then medicate accordingly. I'm so scared that Ryan is going to suffer and also that he may lose all the skills he has should the seizures start up. There is a big fear that if the IS starts up again or new ones start we may not be able to get control of the seizures. The good thing about the wean is that it's possible Ryan may come a little more "alive". Vigabatrin causes a bit of a fog on the brain and it also creates a bit of low muscle tone. His neurologist says not to expect any change in either department but there are lots of people I've spoken to who have weaned their little ones and seen great things. In a sense Ryan has been self weaning since he began the med. His dose has never been increased even though his size has - he is about 10-11 pounds heavier than when he started. This may explain how amazing he's been doing lately...some of the fog may have already begun lifting during his own slow, self wean. So yes, I am excited to see if he progresses more as he get's deeper into the wean but I of course have many more fears about seizure control etc...if bad things start happening.<br /><br />I fear never seeing this gorgeous smiling face again:<br /><a href="http://2.bp.blogspot.com/-HRR7gflZgKw/UTIN38A0N1I/AAAAAAAAAcI/rIbeYONewVg/s1600/IMG-20130221-01011.jpg" imageanchor="1" ><img border="0" src="http://2.bp.blogspot.com/-HRR7gflZgKw/UTIN38A0N1I/AAAAAAAAAcI/rIbeYONewVg/s320/IMG-20130221-01011.jpg" /></a><br /><br />Please pray!Jen Quinlan-Bangildhttp://www.blogger.com/profile/13468233369422016017noreply@blogger.com1tag:blogger.com,1999:blog-847681409438089823.post-84460308766739283232013-02-02T18:11:00.001-08:002013-02-02T18:11:56.686-08:00A (few) weeks to remember!WOW!!! WOW!!! WOW!!! What a great few weeks we've been having!!! :oD<br /><br />On <b>January 16th</b>, Ryan broke his mobile! He had been getting up on his knees (by balancing the back of his head on his crib "walls") to play with it. Occasionally, he would pull on it and pull it right down. This day he snapped the arm right in half!<br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-KQsCdoukM0c/UQ2VrVnx3aI/AAAAAAAAAaY/Y3MIrkeY9iQ/s1600/IMG-20130116-00705.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://2.bp.blogspot.com/-KQsCdoukM0c/UQ2VrVnx3aI/AAAAAAAAAaY/Y3MIrkeY9iQ/s400/IMG-20130116-00705.jpg" /></a></div><br />My Dad was able to fix it and I added some heavy duty duct tape to it but it only lasted a few more days. :o(<br /><br />This video was taken on the 20th of January - he was trying so hard to pull up:<br /><iframe width="560" height="315" src="http://www.youtube.com/embed/SSOo0dTONbI" frameborder="0" allowfullscreen></iframe><br /><br />On <b>January 21st</b> (the 2 year anniversary of when we met with the neurologist for the first time), Ryan pulled up to stand for the very first time!!! He did this at Quin's craft table and fell a split second after he got upright but still...he did it!!! Such a HUGE feat! My Mom was with me to witness the amazing event (just like she was when he got up into a sitting position by himself) and oh did she ever WHOOP with joy! hehe...<br /><br />On the <b>24th of January</b>, he pulled to stand for the first time in his crib!!! This to me was what I had been wait for...that moment when (as a Mom) you walk into your child's room and see them standing up in their crib peeking out at you and the world! <br /><br />Standing in his <i>(heavily padded)</i> crib for the first time:<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-ULx6rJJ3-EI/UQ2WKf-ZfaI/AAAAAAAAAak/qcchAIPgtLg/s1600/IMG-20130124-00804.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://2.bp.blogspot.com/-ULx6rJJ3-EI/UQ2WKf-ZfaI/AAAAAAAAAak/qcchAIPgtLg/s400/IMG-20130124-00804.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-zAkjwLXgmGg/UQ2WKiJ69nI/AAAAAAAAAaw/HW3glGIUliM/s1600/IMG-20130124-00810.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://4.bp.blogspot.com/-zAkjwLXgmGg/UQ2WKiJ69nI/AAAAAAAAAaw/HW3glGIUliM/s400/IMG-20130124-00810.jpg" /></a></div><br />I think it was the day after this picture was taken that the mobile was done for good!<br /><br />On the <b>29th of January</b> he pulled to stand for a 2nd time in his crib and then later that night he pulled up on the couch - first time!!! <br /><br />Standing at the couch for the first time <b>(look at Quin smiling at him)</b>:<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-M9G4Wz8-ORM/UQ2W_YGSiSI/AAAAAAAAAbI/Bf9zKuzjK8w/s1600/couch%2B1.29.13.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="339" width="400" src="http://3.bp.blogspot.com/-M9G4Wz8-ORM/UQ2W_YGSiSI/AAAAAAAAAbI/Bf9zKuzjK8w/s400/couch%2B1.29.13.jpg" /></a></div><br />Since then he's been pulling up on everything and anything! The other night we were playing on the floor when he tried pulling up on my leg! This "inch"stone is so significant to me because for one it shows he physically is able to do it (with a lot of work - at times his little arms literally shake with the effort of pulling). Visually he's motivated to do it! Cognitively/neurologically he's knows he wants to and CAN do it! If he's too far away from something once he's pulled to stand he will walk his feet forward until he's in a comfortable and stable position - it's a beautiful thing to watch! Here is a little video of him in action <i>(what a difference 10 days makes)</i>:<br /><br /><iframe width="560" height="315" src="http://www.youtube.com/embed/diDSmaiJFB4" frameborder="0" allowfullscreen></iframe><br /><br />The last 10 days of January were easily the most amazing that things have been in the last 2 years (relating to Ryan). His mood was SO fantastic! Not a day went by when he wasn't smiling and or laughing and giggling! He's been getting a little grumpy the last couple of days though as his final 2 year molar is still giving him a world of trouble. There are now 2 corners waiting to come through but they just won't! <br /><br />This video here is without a doubt the most touching thing I've seen in a long time. Ryan woke from his nap on January 30th and for some reason Quin wanted to go up to see him. This isn't something she normally does - ever...so I grabbed the iPad and started video taping the monitor to see what she was up to. What happened next took my breath away - it's such a sweet moment - sweet and smart little Quin understanding the magnitude of her brother's accomplishments - couldn't not love them both anymore:<br /><br /><iframe width="560" height="315" src="http://www.youtube.com/embed/X4w0PsjOxKs" frameborder="0" allowfullscreen></iframe><br /><br />Here is a picture taken from the monitor about 5 minutes or so after the video was taken (at the other end of his crib)...I'm still just so emotional about it all (and proud and needing to share)! :o)<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-gfHiYk9R5Tk/UQ24BagZHdI/AAAAAAAAAbk/VAIgf_8_hBg/s1600/IMG-20130130-00855.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://2.bp.blogspot.com/-gfHiYk9R5Tk/UQ24BagZHdI/AAAAAAAAAbk/VAIgf_8_hBg/s400/IMG-20130130-00855.jpg" /></a></div><br />And then there's this one...taken today (February 2, 2013):<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-uwtYWt5YoSA/UQ24NhqR9hI/AAAAAAAAAbw/FkLTDJdHp5o/s1600/IMG-20130202-00874crop.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="391" width="400" src="http://3.bp.blogspot.com/-uwtYWt5YoSA/UQ24NhqR9hI/AAAAAAAAAbw/FkLTDJdHp5o/s400/IMG-20130202-00874crop.jpg" /></a></div><br />Like I said it's been a great few weeks. If you had told me 2 years ago that I'd be feeling this fantastic I'd have looked at you like you had not 2 heads but 5,371 heads! The memories of 2 years ago are still very raw and I expect they will be for some time to come...but like with many things time does heal and you move on - after all the past is the past. I wish however that given all the exciting things that have been happening lately why have I been plagued by this gnawing anxiety?!?!?! I'm not sure but I'm only assuming it's because when things are going so great they generally crash and burn soon after. I'm not trying to sound like a drama queen...if you've read the blog you know what I'm talking about. Ryan can have these great spurts of development and happiness then not long after all h*ll breaks loose. <br /><br />Time will tell and we'll see...<br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br />Jen Quinlan-Bangildhttp://www.blogger.com/profile/13468233369422016017noreply@blogger.com2tag:blogger.com,1999:blog-847681409438089823.post-64573074342774954312013-01-11T19:27:00.001-08:002013-01-11T19:27:07.906-08:00Bringing in 2013 with a little pneumonia<div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-MSBAL1PWOhA/UPDGB3dKCrI/AAAAAAAAAY8/FLF25h4tqPo/s1600/gorgeous.png" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="159" width="213" src="http://4.bp.blogspot.com/-MSBAL1PWOhA/UPDGB3dKCrI/AAAAAAAAAY8/FLF25h4tqPo/s400/gorgeous.png" /></a></div><br />Yup, that’s right…Ryan has pneumonia. The bright side is you'd never know it! He’s playing and happy and so animated about life – it’s amazing! However, when he started coming down with it he was miserable. Just so sad and weak. For 2 straight days he wanted/needed to be held constantly (not that I'm complaining)…the second I put him down he would fall apart. As most of you know with pneumonia comes a fever. Ryan has never had a fever believe it or not in his whole 2 years until January 3, 2012. He only hit 101.3 but it was enough to send me into a full blown state of panic (fearing a febrile seizure). I’ve never pumped Tylenol into a little one so fast in my life. Thankfully it did come down! Right now he’s on some heavy duty antibiotics to clear everything up. I’m just hoping his little tummy does ok on these meds (got him on some probiotics to help out)!<br /><br />So that's how we're kicking off the new year...let me update you a bit on how the end of 2012 went!<br /><br />On November 30, Ryan's endocrinologist upped his thyroid meds a bit. It wasn't long before we again saw an increase in alertness...a better more stable mood and strength. On top of his thyroid increase from his endo, his pediatrician upped his iron dose - this also helped with all of the above. While I'm chatting about it I thought I'd jot down his daily meds as I've had a couple of questions about what he takes and when.<br /><br /><b>With Breakfast<i></i></b><br />Prevacid - 5ml (for reflux)<br />Vigabatrin - 750mg (for seizures)<br />Polyethelene Glycol - 8mg (for poop)<br />Iron - 1ml (he has low iron levels)<br />B6 - 50mg (for mood and overall neuro development)<br /><br /><b>With Lunch<i></i></b><br />Iron - 1ml (he has low iron levels)<br /><br /><b>With Dinner<i></i></b><br />Levothyroxine - (different amounts on different days)<br /><br /><b>At Bedtime<i></i></b><br />Vigabatrin - 750mg (for seizures)<br />Melatonin - 3mg (to help him fall asleep - but I'm going to start weaning him soon)<br /><br />Right now he's also taking his antibiotics 2 x's a day as well as a probiotic supplement 2 x's a day. He also has 2 puffers as needed. Not too mention Tylenol and Advil to help him get through the teething (1 last molar to go)!<br /><br />Here is a summary of all his amazing "inch"stones (and 1 awesome one from Quin) in 2012:<br /><br /><b>December 23, 2011</b> <i>(14 months)</i>: Lifted his head for 4 seconds while in <br />semi-crawling position<br /><b>January 9, 2012</b> <i>(almost 15 months)</i>: Sat unassisted for 4-5 seconds<br /><b>February 8, 2012 </b><i>(almost 16 months)</i>: Sat unassisted for 42 seconds<br /><b>March 14, 2012</b> <i>(almost 17 months)</i>: Made a "beh" noise<br /><b>March 17,2012</b> <i>(almost 3 years)</i>: Quin pee'd on the potty <b>*that's right - it happened on St. Patrick's Day* </b><br /><b>March 26, 2012</b> <i>(17 months)</i>: Went from tummy to sitting<br /><b>April 22, 2012</b> <i>(18 months)</i>: Found Ryan sitting up in his crib<br /><b>May 17, 2012</b> <i>(19 months)</i>: Put a piece of food (cheese) in his mouth<br /><b>June 19, 2012</b> <i>(20 months)</i>: Started sitting up in his bouncy seat in the bath<br /><b>June 20, 2012</b> <i>(20 months)</i>: Fed himself a veggie stick<br /><b>July 25, 2012</b> <i>(20 months)</i>: Started tiny butt scoots<br /><b>September 28, 2012 </b><i>(23 months)</i>: Got up into sitting from lying on his back<br /><b>October 2012</b><i> (2 years</i>): Started spinning on his bum to find his toys<br /><b>October 29, 2012</b><i> (2 years</i>): Stood unassisted for 3 seconds<br /><b>December 15, 2012</b> <i>(26 months)</i>: Held his bottle all by himself<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-WJ2hirWgoK0/UPDGQ2KmJ5I/AAAAAAAAAZI/46iBUBvQ_vs/s1600/holdingbottle.png" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="159" width="213" src="http://4.bp.blogspot.com/-WJ2hirWgoK0/UPDGQ2KmJ5I/AAAAAAAAAZI/46iBUBvQ_vs/s400/holdingbottle.png" /></a></div><b>December 24, 2012</b> <i>(26 months)</i>: Butt scooted 4-5 feet<br /><b>December 25, 2012</b> <i>(26 months)</i>: 3rd molar finally popped through<b> *Merry Christmas*</b><br /><b>December 27, 2012</b> <i>(26 months)</i>: Caught Ryan on his video monitor up on his knees batting away at his crib mobile <b>*Happy Birthday to me*</b><br /><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-KXSs3WvjVuM/UPDGaB6idbI/AAAAAAAAAZU/OrK8OdmxLhk/s1600/mobile.png" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="159" width="213" src="http://1.bp.blogspot.com/-KXSs3WvjVuM/UPDGaB6idbI/AAAAAAAAAZU/OrK8OdmxLhk/s400/mobile.png" /></a></div><b>December 31, 2012</b> <i>(26 months)</i>: Butt scooted towards me when I asked if he <br />wanted his bottle!<br /><br />The other great thing about 2012 is that Quin has really taken more of an interest in Ryan and even at times he has been curious about her - makes my heart feel so cozy when I see them together!<br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-slFwM-bcoHQ/UPDNmjH9JdI/AAAAAAAAAZ8/lLzkBw1k94s/s1600/qrbottle.png" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="159" width="213" src="http://2.bp.blogspot.com/-slFwM-bcoHQ/UPDNmjH9JdI/AAAAAAAAAZ8/lLzkBw1k94s/s400/qrbottle.png" /></a></div><br />I thought I would take a look back at Ryan's appointments from 2012 as well and total them all up. His doctor appointments include: family doctor, pediatrician, neurology, endocrinology, ophthamology, GI and ENT. The therapy appointments include: physiotherapy, occupational therapy, music therapy, speech therapy and vision therapy.<br /><b><br />Doctor: 54 appointments<br />Therapy: 163 appointments</b><br /><br />So where are we you might ask with regards to weaning him off of Vigabatrin. Well, considering I'm still sitting here typing away it's safe to say it hasn't happened yet. When it does I'll be in a straight jacket and heavily sedated I think. It'll happen...it has to but it's still "not time" yet. I have a couple of wean schedules all ready to go in Excel and there they will be...till I'm ready.<br /><br />I wanted to share this little video with you all (it was taken yesterday on January 10th, 2013)..it's not the best as I did end up cutting Ryan's head off but was by myself and had the iPad propped up on Quin's craft table so it's the best I could do.<br />Yesterday was a good day...probably the best I've had in a long long time with both wee ones. I was a duty Mom in the morning at Quin's school and had so much fun. All the kids are so great to be around...the teachers are just so amazing and the other duty Mom's are such wonderful people...it's just a happy happy place to be and I love it! Jeff and Ryan spent the morning together and had a good time so that made me happy too! Later in the day, Ryan was something else. I really don't even know how to describe it..he was Mr. Personality and Mr. Curious all rolled into one. After seeing him feel so poorly at the beginning of his pneumonia I was on cloud 9 with what I was seeing last night. Between the two of them (Quin who was just super awesome herself) and Ryan my heart felt like it was wrapped up in the coziest blankets ever...it was a happy happy night. This might sound a little twisted but I was really happy about with what this video portray's...a genuinely ticked off Ryan. I did a little physio with him throughout the day...this was taken in the evening and oh lordy was he ever mad at me!!! You can see once I finished that one tini tiny little exercise how he was ok with the world again...little bugger. In the background you can see sweet little Quin working away on one of her puzzles...it was just a good good night! Love my little bums so much!<br /><br /><iframe width="560" height="315" src="http://www.youtube.com/embed/3dYP_yRLwDA" frameborder="0" allowfullscreen></iframe><br /><br />Happy New Year everyone! :o)<br />Jen Quinlan-Bangildhttp://www.blogger.com/profile/13468233369422016017noreply@blogger.com1tag:blogger.com,1999:blog-847681409438089823.post-58180277094339076702012-11-16T20:22:00.000-08:002012-11-16T20:22:35.696-08:00Oh hello November where did you come from?Ok, so here's what happened...October arrived...I blinked then BOOM all of a sudden it was November...!!! I blog really well in my head - it's finding the time to sit down and type it all out that's the problem! <br /><br />October was filled with all kinds of wonderful things! Quin, myself, my Mom, sister and one of my nephews all went to The Wiggles concert! It was also Quin's very first train ride (I'm still trying to figure out which she had more fun doing)! <br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-fNnRLROHXUg/UKcBeMoWrSI/AAAAAAAAAX0/E_0sT4uIjIc/s1600/IMG_4723.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://4.bp.blogspot.com/-fNnRLROHXUg/UKcBeMoWrSI/AAAAAAAAAX0/E_0sT4uIjIc/s400/IMG_4723.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-GTONBt1B5ZM/UKcBes_2loI/AAAAAAAAAYA/2F627d2HYbM/s1600/IMG_4738a.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="400" width="300" src="http://2.bp.blogspot.com/-GTONBt1B5ZM/UKcBes_2loI/AAAAAAAAAYA/2F627d2HYbM/s400/IMG_4738a.jpg" /></a></div><br />Ryan's GI appointment came and went. All the doctor said (after making us wait over 2 hours for him) was to just keep doing what I'm doing for him. Not kidding...the entire appointment took less than 5 minutes. I was highly unimpressed to say the least! But on the bright side what I am doing seems to be working *knock on wood* so we'll just keep up with the poop meds and high fiber fruits and veggies and hope it all keeps going well for him.<br /><br />A different issue for the big guy has been his pesky 2 year molars. They have been causing him grief since the summer. Two top molars (one corner of each) finally popped through in October with one more corner on just one tooth popping through now (mid November). Nothing yet on the bottom. He's been in agony off an on - so unfair. His speech therapist told me that because he isn't chewing food (he can only manage puree'd food right now) his tissues etc aren't being stimulated enough to encourage tooth growth. <br /><br />On the 15th of October Mr. Tough and Tenacious turned 2 years old!!! He had a good day and enjoyed opening up his presents (with the help of his big sister Quin). He wasn't quite as happy with the cake or ice cream though!<br /><br />Here's your card Ryan!<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-eWsEhrzhJZk/UIxSxXdVmAI/AAAAAAAAAXA/5HM_VlY7zrE/s1600/IMG_4791.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://1.bp.blogspot.com/-eWsEhrzhJZk/UIxSxXdVmAI/AAAAAAAAAXA/5HM_VlY7zrE/s400/IMG_4791.jpg" /></a></div><br />Checking out his high contrast wrapping paper!<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-zm3YOKGbylw/UIxSxlhK96I/AAAAAAAAAXM/NEI42v8_JcI/s1600/IMG_4794.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://3.bp.blogspot.com/-zm3YOKGbylw/UIxSxlhK96I/AAAAAAAAAXM/NEI42v8_JcI/s400/IMG_4794.jpg" /></a></div><br />Yum...?!?!?<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-blDxmsRzjaI/UIxSyRIy3fI/AAAAAAAAAXY/ovxUVkmnSNQ/s1600/Yum%2B-%2B10.15.12.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://2.bp.blogspot.com/-blDxmsRzjaI/UIxSyRIy3fI/AAAAAAAAAXY/ovxUVkmnSNQ/s400/Yum%2B-%2B10.15.12.jpg" /></a></div><br />On the 29th <i>*drum roll please*</i> Ryan stood unassisted for 3 seconds during his PT session!!! It was the neatest thing to see! I was super happy of course - driving home from the appointment is when it hit me how important that feat really was - BAM the tears started falling! <br /><br />Unfortunately, since that day Ryan's health and mood have been suffering. I haven't been able to keep up his PT work at home and his sessions out of the house haven't been much more productive. He came down with a minor chest infection early November, seemed to go through a bit of a growth spurt and has had increased irritation and frustration from his teeth. All of that is what I hope is causing him to be a little weaker and not as willing to work consistently. I say consistently because there are the odd moments where things kick in and come together and he seems "ok". Then he'll turn around and seems to have regressed in a way. IDK..."I don't know..." - it's the term we use a lot when it comes to Ryan - lol!<br /><br />Also in October - Jeff, Ryan and I had a follow up appointment with the neurologist regarding his VEEG from September. We discussed how to handle the ongoing treatment with his Vigabatrin. Do we keep him on it or try to start weaning him? To put things into perspective on how I feel about weaning him off his miracle drug...I would honestly feel as if I was pushing him out of an airplane with no parachute. The thought of him coming off of VGB makes me very very ill. A typical Vigabatrin wean takes 4 - 6 weeks. Ryan's neuro is so respectful of my anxiety that we have worked out a wean plan that will take just over 1 year to complete! I asked if that has ever been done before and both he and the neuro nurse said "NO". Ok so I'm a little paranoid. He's my "silly little bum" who I love to bits and am terrified of him suffering when he comes off the meds. It's possible he will be fine in that the Infantile Spasms probably won't come back. Most kids out grow 'spasms' by the age of 2 years. BUT the chance is still very real and very there that they will come back. I just can't let him go through that again. The other issue is that Ryan does still have a lot of activity at the back of his brain (in the Occipital Lobes). His brain is basically trying to have a seizure but is unable too possibly because of the Vigabatrin or possibly it's just not 'ready' yet. As he get's older the risk of Ryan having new and different seizures is very real and big. So for now we're going to wait on the wean (unless his next ERG on November 28th show's retinal toxicity) until his teeth are in and he's comfortable and not dealing with any external aggravations.<br /><br />Enough of that heaviness...let focus on the sweetness of both my kiddo's!<br /><br />In October, Quin said a couple of things that caught me off guard. One day while I was doing some PT with Ryan, she told me she wants Ryan to chase her and then she said, "He will run with me". She wants what every little one with a sibling wants...someone to play with. On the day of his birthday as we blew out his candles she asked "Can Ryan speak now?". Just when you think your heart can't break anymore... Last weekend I was a "bit" worried as I was watching Ryan...he did this weird snapping of his lower jaw thing so I instantly panic thinking it's some possible seizure about the take hold of him. Quin grabs my arm that was reached out to him and says, "Don't worry Mommy, he's just trying to give you a kiss." Really? Does it get much more innocent and sweet than that. I really need to get a grip somehow before I send Quin spiraling down into Crazyville with me!<br /><br />Given all the *bleep* that Ryan has been dealing with in the last month or so he's still managing to amaze and impress. His interest in his toys is incredible. He's playing SO much and he's able now to spin around on his bum using his feet to look for his toys...LOOK for his toys - I love being able to say that! He's also making some new sounds...lots of "mmmmmm" noises are coming from him and I swear when he makes a "mmmmuuuuuuummm" noise he's trying to say "Mommy"! Maybe I'm just being hopeful but I don't know....it could be!<br /><br />Here is a little video taken about a month ago of Ryan looking at and getting one of his favourite toys!<br /><br /><iframe width="560" height="315" src="http://www.youtube.com/embed/zonxtXKccN4" frameborder="0" allowfullscreen></iframe><br /><br />Just a "tiny" little side note. November is Epilepsy Awareness month. This ribbon was made for Ryan by one of the epilepsy Mom's I know through Facebook. If your on Facebook check out the page she has created for her sweet boy Connor - it's called: The Adventures of Connor Man - he's a tough little dude with an equally tough little Mommy!<br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-cWNTyM3lDNI/UKcMszgKiYI/AAAAAAAAAYc/WV4o6-KWF0s/s1600/2222222.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="400" width="267" src="http://3.bp.blogspot.com/-cWNTyM3lDNI/UKcMszgKiYI/AAAAAAAAAYc/WV4o6-KWF0s/s400/2222222.jpg" /></a></div><br />Here is a video that I have debated posting purely for selfish reasons. I let Ryan down and am so very angry that I failed him. 15 months went by before I could look at this video. Ryan went through approximately 1.5 months of hell (9 months old - 10.5 months old) before he was diagnosed with Infantile Spasms. Due to his neurological impairment, vision impairment and hypotonia I just figured what was happening was due to his already existing conditions. Never in a million years did I think he was having seizures/spasms. I certainly had never heard of Infantile Spasms. For the rest of my life I will be constantly questioning "what if"...what if his IS had been caught and treated sooner. Would he be doing better developmentally? He certainly would have suffered less. I know that that is part of the reason I am so hyper paranoid about every little new or different movement or sound he makes these days. I failed him once by not knowing he was suffering with IS...I won't make the same mistake twice. If that means driving his neurologist insane with lots of video's and emails about anything that seems off then so be it. I will not screw up again. I'm not looking for pity or comments like "you didn't fail Ryan" etc... It is what it is...I should have known. The beauty of the entire situation is that you can't dwell on the "what ifs"...I allow myself to do so only once in a blue moon (apparently the moon is blue tonight). For Ryan the best thing is to keep moving forward and go go go!<br /><br /><iframe width="560" height="315" src="http://www.youtube.com/embed/np-yYc8w1og" frameborder="0" allowfullscreen></iframe><br /><br />Jen Quinlan-Bangildhttp://www.blogger.com/profile/13468233369422016017noreply@blogger.com0tag:blogger.com,1999:blog-847681409438089823.post-13559063682748702622012-10-02T17:34:00.001-07:002012-10-02T18:18:40.804-07:00VEEGMonday evening, September 17th we got the call - time to go in for the video EEG! We were told to arrive anytime after 8pm which made things a little confusing for Ryan. Bath, bottle, van - WHAT? But he handled it well. <br /><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-qulP56Q02PE/UGuAgrJ-lbI/AAAAAAAAAVw/W7RheJIhpl4/s1600/IMG-20120917-00884.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://2.bp.blogspot.com/-qulP56Q02PE/UGuAgrJ-lbI/AAAAAAAAAVw/W7RheJIhpl4/s400/IMG-20120917-00884.jpg" /></a></div><br />My Dad came with Jeff and I to help get Ryan settled and to help cart all our stuff to his room - yikes! We brought all his bumpers and just about every toy he had from soft ones to bigger electronic type toys and of course his high contrast black and white books. We basically brought everything but the kitchen sink as you can see in this picture (all this for a 24 hour - 4 day stay):<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-NL4Ild3a5Y0/UGtoFK9H10I/AAAAAAAAAUw/OTGg_Ish2gg/s1600/IMG-20120917-00871.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://1.bp.blogspot.com/-NL4Ild3a5Y0/UGtoFK9H10I/AAAAAAAAAUw/OTGg_Ish2gg/s400/IMG-20120917-00871.jpg" /></a></div><br />We shared a room with a young mother who was there with her 3 week old. Not sure what he was in there for but he was hooked up to an IV for fluids and antibiotics. As we were getting Ryan's crib ready the nurse came in and checked him out - temp, blood pressure, heart rate etc. She then told us that the EEG tech's would be hooking him up the NEXT day! Well what the heck are we doing here NOW? Ryan could be home in his own crib and I could have avoided a night in this thing:<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-HGK5CczATt8/UGt_jBPP_bI/AAAAAAAAAVM/msjkTxineiI/s1600/IMG-20120917-00885.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://1.bp.blogspot.com/-HGK5CczATt8/UGt_jBPP_bI/AAAAAAAAAVM/msjkTxineiI/s400/IMG-20120917-00885.jpg" /></a></div><br />Oh well, we were in the hospital which is where I had been wanting him to be for a while...we'll have a nice little sleep and get hooked up the next day. That nice little sleep indeed was little but definitely not nice. The poor little baby next to us had to have his IV replaced twice in the night and holy smokes he was one loud squawky little thing. It was a long loud, brightly lit night that left me with about 2 hours of sleep and Ryan with a scattered few more than that. Morning came and with it brought a whole new avalanche of nerves as we waited to get hooked up. My Dad came by early to bring me some breakfast (he's the best)! While he was there a nurse came to escort us to the EEG room to get Ryan hooked up. His head was measured and marked and all 25 electrodes were glued and cemented to his head. Then came the gauze, tape and stocking/hat complete with a "tail" to keep all the wires encased and tidy. Here's what the back of his head looked like - complete with his own little ducky tail:<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-xzED64rtrQ8/UGuAYsl3gII/AAAAAAAAAVk/pAY3igCCcKY/s1600/IMG-20120918-00916.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://3.bp.blogspot.com/-xzED64rtrQ8/UGuAYsl3gII/AAAAAAAAAVk/pAY3igCCcKY/s400/IMG-20120918-00916.jpg" /></a></div><br />Back down to his room we went with the EEG tech pushing the camera/monitor cart thingy in front of us. Ryan got re-settled in his crib and was "plugged" in. As soon as I saw his brain waves blipping away on the screen my stomach was sent way down to my toes! I hate that monitor! I took this during one of his "episodes" (freaked the heck out of me - the lines are suppose to be nice and mellow in a 'normal' brain). The neuro says this is what the brain looks like as it's getting drowsy...hhhmmmm...okaaaaayyyy:<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-2PzslwSuEQI/UGt_tCcOD3I/AAAAAAAAAVY/q5RmIAXDvsk/s1600/IMG-20120918-00904.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://4.bp.blogspot.com/-2PzslwSuEQI/UGt_tCcOD3I/AAAAAAAAAVY/q5RmIAXDvsk/s400/IMG-20120918-00904.jpg" /></a></div><br />Ryan's neuro and a couple of residents came in to check on him throughout his stay. I was very very impressed with the attention, care and consideration Ryan and I were given by his team. It was nice to have after an incredibly rude and somewhat hurtful e-mail I had received from a different doctor just a couple of days before (regarding a video I had sent of Ryan). The neuro was wonderful when dealing with my anxieties about what I was seeing on the monitor and explained a lot of the blips to me. I told him he wasn't allowed to leave the room and all he did was laugh not too sure what was so funny as I was quite serious and in the back of my head I was thinking of ways of barricading him in the room with Ryan and I! <br /><br />The second night we were there Ryan could not settle and was awake crying until 2:00am. As soon as he would settle just a tiny bit the baby beside us would start up and set Ryan off (weird because he's not usually bothered but stuff like that). Poor guy though was so out of sorts and just wanted the peace, quiet and comfort of his own bed. Morning came quickly and with it came more hours of standing and staring at Ryan waiting for something to happen! For our entire 3 day stay (48 hours hooked up) he had only 3 "episodes" and all were fairly weak. <br /><br />Here is a picture of Ryan doing a little post dinner vision stimming with the iPad:<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-n7KxOLOwqcQ/UGuCdjjCsXI/AAAAAAAAAV8/j4vCdjHu9Vc/s1600/IMG-20120919-00926.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://2.bp.blogspot.com/-n7KxOLOwqcQ/UGuCdjjCsXI/AAAAAAAAAV8/j4vCdjHu9Vc/s400/IMG-20120919-00926.jpg" /></a></div><br />Our 3rd night was great as our neighbours had been discharged that afternoon so it was just the 2 of us all night long. It was awesome! We both slept really well. I woke up and waited for another episode but Ryan wasn't really cooperating - haha! He was however starting to get bored on day 3 and a little antsy. During the neuro's rounds that morning he asked if I felt we had enough data to get some answers. I think we did.....discharge papers were written up and the tech came down to soak the leads off Ryan's head. After a long 48 hours of not being able to rub Ryan's silky little curls I was very anxious to get his "hat", tape, glue etc...off! I was very shocked and could have used a little warning before I saw THIS (September 20th):<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-SRBBXUlt-p0/UGuCtPIH6bI/AAAAAAAAAWI/SuPuYZnytOQ/s1600/IMG-20120920-00927.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://1.bp.blogspot.com/-SRBBXUlt-p0/UGuCtPIH6bI/AAAAAAAAAWI/SuPuYZnytOQ/s400/IMG-20120920-00927.jpg" /></a></div><br />We got him home in time for lunch and a nap in his own crib...here's our sweet little bum post nap, clutching one of his favourite bed toys (it's gross and stained but he loves it):<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-VZKwCEKIvdI/UGuFdCRYvFI/AAAAAAAAAWk/7BmV7hjVO9c/s1600/IMG-20120920-00930.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://2.bp.blogspot.com/-VZKwCEKIvdI/UGuFdCRYvFI/AAAAAAAAAWk/7BmV7hjVO9c/s400/IMG-20120920-00930.jpg" /></a></div><br />It took a good few days to for both of us to catch up on some sleep. It was good to have some down time when we got home because the following week was nuts! 7 therapy appointments, 2 days of nursery school for Quin (one I was a duty parent for), plus toy cleaning duty at Quin's school. This was also the week I had to leave her for the first time ever in my life with "strangers". I was emotional on the way there....fell apart in the parking lot....composed myself enough to go in. Got to play with some of the kids and Quin for a bit but felt myself started to buckle as I watched her walking around. I scooted into the other room where the kitchen is and let myself fall apart. The poor Mom on snack duty (she was in the kitchen prepping the snack) must have thought I was crazy. Before I could get myself together and head back out for a goodbye circle time had started so I had to wait. I went back out and watched Quin dancing and having fun during circle time (such a relief to see). When the kids were all excused for free play I rushed Quin over to the painting easels (probably her favourite station - one I knew would be a good distraction for her). This was it....the moment I had been dreading since pretty much the day she was born....that hug, kiss and goodbye that begins the early stages of independence (aka Mommy has no control over what happens after she leaves). With a VERY large lump in my throat I choked out a quick goodbye and reassured her that I'd be back to get her when school was over. A big squeeze and kiss and the tears fell literally as I was rising from my squatted position and turned to walk away. Sobbed the whole way back to the van and home. I would have stayed in the parking lot for the next 2 hours but Ryan had a 10am therapy session so I had no choice but to leave (worked out for the best really)! When, Ryan and I picked her up I got the biggest hug and soaked in her "I missed you Mommy"! Home we all went happy to have made it through the day. I think that night I slept like a log....holy smokes emotions sure do tucker a person out!<br /><br />Monday October 1st, we met with the epileptologist. We learned that Ryan didn't have a single seizure during the 48 hours he was hooked up - GREAT news!!! You would think I felt a little reassured...maybe a tini tiny bit but that's about it. Once Ryan comes off Vigabatrin we wait for things to happen. Will the his Infantile Spasms return? Will he quickly transition into new seizures? How bad will they be? Basically we will be living the rest of our life / Ryan's life on edge waiting for him to have new and different seizures including Grand Mal (the full blown scary looking kind). Its great knowing he didn't show any seizure activity for the 48 hours he was hooked up for but maddening and frightening knowing the activity at the back of the brain is still there (about 70% of IS kids have the activity in the occipital lobes). As his neuro describes it, the epileptiform discharges that are happening in Ryan's beautiful brain are like little sparks. If there are enough sparks happening and they begin to happen more and quicker they ignite a fire (aka a seizure). <br /><br />In most cases IS resolves around 18 - 24 months. In some cases it can continue to the age of 5 but its not common. If the spasms return 1-2 months post wean, Vigabatrin would probably work at controlling them again. Any longer than that and the brain has already moved on from the drug and it very possibly wouldn't work. <br /><br />If he was to have a bunch of little seizures his brain should be fine. Doctor's can't tell me how many it would take to cause damage (no one knows apparently). If he was to have a Grand Mal lasting more than 25 minutes some damage could occur...coma's are possible but its not always a likely occurrence. I asked at what point do we call 911. He said anything involving body convulsing lasting more than 5 minutes. Under no circumstances are we to put him in the car and transport him ourselves. <br /><br />Its all a lot to take in but nothing much new that we didn't already know about. We wish we didn't have to know about any of these terms of course. <br /><br />Back to the hospital on Thursday for his GI appointment. <br /><br /><br />Jen Quinlan-Bangildhttp://www.blogger.com/profile/13468233369422016017noreply@blogger.com0tag:blogger.com,1999:blog-847681409438089823.post-49138810388433512842012-09-14T12:33:00.000-07:002012-09-14T12:33:07.253-07:00Here we go again...<div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-7nWL9hb5dvM/UFN7mxOb3jI/AAAAAAAAAR0/cbAthTCXqlU/s1600/IMG-20120828-00657.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://4.bp.blogspot.com/-7nWL9hb5dvM/UFN7mxOb3jI/AAAAAAAAAR0/cbAthTCXqlU/s400/IMG-20120828-00657.jpg" /></a></div><br />Well as expected, I should have kept my mouth shut. Stealing a quote from "Nemo", good feelings gone. <br /><br />Ryan has been having more unusual episodes (aka possible seizure activity - we don't know). Since he does still have activity at the back of his brain in the occipital lobes I am on the look out for anything strange. For a number of months I have been sending emails and video's to his neuro and nurse with what I think is some kind of seizure activity but I constantly get the response of "no, he's fine. We don't see anything concerning" etc... Easy for them to say as its not their child!!! Well in the last 10 days as I said he's been having more unusual episodes. <br /><br />What we've been seeing is Ryan go from animated and "with it" to quiet and still with his eyes kind of closed and squinting almost like he has a headache. He even flinches at times and will raise his hand up to his head and eyes almost like you would do if you have a migraine. The episodes last anywhere from a few minutes up to half an hour. Last week, as he coming out of one the phone rang and wouldn't you know it was the hospital calling. It turns out they are changing his 6 hour video EEG (VEEG) which was scheduled for Sept 21 to a 4 day/night maximum VEEG possibly this coming weekend (we'll hopefully get a call on Sunday the 16th - all depends if they have a bed available for him) I guess the neuro is finally coming on board with my Mommy gut instinct and feels we need to get to the bottom of what's happening.<br /><br />From Friday and over the weekend I sent quite a few emails and video's to the neuro without getting any response. On Sunday the 9th at around 11:30am when another one was starting we threw the kids in the van and headed to the ER. As we were driving he came out of it and was playing and happy again. When we got to the hospital my parents came to get Quin so Jeff and I could stay with Ryan (my parents are seriously over the top awesome). I explained to the dingbat ER doctor what was happening, showed him some video's and explained all of Ryan's conditions. He says he's heard of different types of epilepsy but isn't familiar with them *sigh* Then he had to go to his computer to look up Septo Optic Dysplasia as he didn't know what that was either. Can't fault him for that as it really isn't very common (1 in 10,000 births). He even seemed surprised at the Hypotonia diagnosis saying "he doesn't look like he has low muscle tone". This was said as Ryan was sitting completely bent over with his little forehead pressed into the bed. Whatever doc! Anyway, he ran some blood work (even threw in some of the SOD blood work) and he was catheter'd for a urine sample. As always Ryan's tricky little veins proved troublesome for the pediatric nurse. She tried and tried in his elbow but the vein was impossible to get. Success was made after a lot of fishing around in the back of his hand (I won't go into detail about how badly Ryan was crying - all I will say is that I was certain his heart was going to stop). Here is his poor little bloody hand and inner elbow:<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-VmdOBKld020/UFN71-ZEjtI/AAAAAAAAASA/DCx-k18ngnU/s1600/IMG-20120909-00840.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://1.bp.blogspot.com/-VmdOBKld020/UFN71-ZEjtI/AAAAAAAAASA/DCx-k18ngnU/s400/IMG-20120909-00840.jpg" /></a></div><br />Everything came back normal which was great (we hold on tight to any good news we get)! The ER doc spoke to the neuro on call who ironically is the neuro we're probably switching to in a few weeks (appt Oct 1). He wasn't too concerned with what is happening with Ryan and said all we can do is try to capture some of these episodes on the VEEG and go from there. Home we went utterly frustrated and still drowning in stress and worry. Unfortunately, we had to wake Ryan from a peaceful little nap:<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-yY6OPybMStM/UFN8GML84yI/AAAAAAAAASM/ALTLq0eyzwE/s1600/IMG-20120909-00841.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://2.bp.blogspot.com/-yY6OPybMStM/UFN8GML84yI/AAAAAAAAASM/ALTLq0eyzwE/s400/IMG-20120909-00841.jpg" /></a></div><br />The next night (Monday), on the eve of Quin's first day of nursery school he had another episode (he has about 2 a day - one in the mid/late morning hours and another in the late evening/bedtime hours). The episode lasted about 15 minutes and was no different than any other. His reaction this time though was very heartbreaking. He cried and cried and kept touching, almost rubbing his eyes and head and was just so upset. I held him as tight as I could without crushing him. He came out of it and had a good sleep that night. In saying that he's been sleeping better at night which for most Mommy's they'd be over the moon about but for me its sending me into an even bigger worrying frenzie as I'm thinking and wondering maybe he really is seizing throughout the day and is just so tired from it all that its making him sleep better at night.<br /><br />Today is now Friday and as I type I am still thinking about the latest episode from 10:30am today. He didn't seem bothered by it but it's just so troubling to watch him. The unknown is part of the biggest stressor. The only "good" thing about any of this is that when he does have an "episode" he allows me to hold and cuddle him. Normally he's just so crazy active and needing to move that it's impossible for him to be still (which will make it real fun when he has 25 dainty wires glued all over his head). In the past, his EEG's have been 30 - 45 minutes in length. This one will be 1 - 4 days - where I will find the ability to keep my sanity I don't know. Between trying to keep him still and untangled, watching him like a hawk for anything unusual and staring at the monitor's watching his brain waves blipping away....ummmmm ya! Let's not forget the other precious little person going through all this...sweet Quin. Fingers crossed the VEEG captures enough episodes (not that I want him to have ANY) in a 24 - 48 hour maximum time frame so that I can get back home. I'm sure Quin will be fine but I'm not too sure. The other night I was out for dinner with a friend when I got a text from Jeff saying Quin refused to go to sleep until she saw me...oh dear! Sure enough when I got home at 9pm there was Quin singing away doing her ABC's. Next week is also suppose to be her first day at nursery school with OUT me (I was a duty parent for her very first day this past Tuesday). If I am at the hospital with Ryan we will probably keep Quin home until life gets back to normal (whatever THAT is). Really - normal is over-rated not too mention boring! If there's one thing for sure...we're never bored in this house!<br /><br />Here are some more random pictures from the last couple of weeks:<br /><br />Ryan in his modified "bath seat" (yup that's a belt):<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-Qnxss7BS0hQ/UFN_565ouNI/AAAAAAAAASo/5WvMCdkRmOM/s1600/IMG-20120828-00661.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://1.bp.blogspot.com/-Qnxss7BS0hQ/UFN_565ouNI/AAAAAAAAASo/5WvMCdkRmOM/s400/IMG-20120828-00661.jpg" /></a></div><br />Checking out the iPad together:<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-c59nMEwZ6Uc/UFN_6Q_6csI/AAAAAAAAAS0/9G19xLunXiE/s1600/IMG-20120831-00722.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://1.bp.blogspot.com/-c59nMEwZ6Uc/UFN_6Q_6csI/AAAAAAAAAS0/9G19xLunXiE/s400/IMG-20120831-00722.jpg" /></a></div><br />Making Ryan pretty with a little lip balm (Quin is about to get clobbered by Ryan's new therapy shoes):<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-XpVJ9IUzCeA/UFN_7FyhoqI/AAAAAAAAATA/K7OjVhYzYeo/s1600/IMG-20120901-00736.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://3.bp.blogspot.com/-XpVJ9IUzCeA/UFN_7FyhoqI/AAAAAAAAATA/K7OjVhYzYeo/s400/IMG-20120901-00736.jpg" /></a></div><br />Fancy new sensory area:<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-_2jdP99dQLs/UFN_81AMUXI/AAAAAAAAATM/pZSF8oEgFgg/s1600/IMG-20120906-00795.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://1.bp.blogspot.com/-_2jdP99dQLs/UFN_81AMUXI/AAAAAAAAATM/pZSF8oEgFgg/s400/IMG-20120906-00795.jpg" /></a></div><br />LOVE this picture:<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-eKApWUmVg4Q/UFN_9GZdHlI/AAAAAAAAATY/p_mKAK6-IK8/s1600/IMG-20120906-00832.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://3.bp.blogspot.com/-eKApWUmVg4Q/UFN_9GZdHlI/AAAAAAAAATY/p_mKAK6-IK8/s400/IMG-20120906-00832.jpg" /></a></div><br />This is what you too could do if you had hypotonia and hypermobility:<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-4a-Xk2vnqPw/UFOBI-y6BYI/AAAAAAAAATk/ooTkFKHz94o/s1600/IMG-20120831-00729.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://3.bp.blogspot.com/-4a-Xk2vnqPw/UFOBI-y6BYI/AAAAAAAAATk/ooTkFKHz94o/s400/IMG-20120831-00729.jpg" /></a></div><br />Working out with a Mommy modified 2.5lb pilates ball:<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-LVNi5t5Dv7w/UFOBJUjnmXI/AAAAAAAAATw/7ffUMIKT_oY/s1600/Lifting%2Bweights%2B8.29.12.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://2.bp.blogspot.com/-LVNi5t5Dv7w/UFOBJUjnmXI/AAAAAAAAATw/7ffUMIKT_oY/s400/Lifting%2Bweights%2B8.29.12.jpg" /></a></div><br />So sweet:<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-9RXWyznpInM/UFOC_uzHaBI/AAAAAAAAAUI/tmdMnnMYCzU/s1600/IMG_4608.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="400" width="300" src="http://3.bp.blogspot.com/-9RXWyznpInM/UFOC_uzHaBI/AAAAAAAAAUI/tmdMnnMYCzU/s400/IMG_4608.jpg" /></a></div><br />Happy 1st day of nursery school Quin:<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-udnhBbqeGgU/UFODc6UVf5I/AAAAAAAAAUU/yDrT0J2LVq0/s1600/IMG_4625.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="400" width="300" src="http://2.bp.blogspot.com/-udnhBbqeGgU/UFODc6UVf5I/AAAAAAAAAUU/yDrT0J2LVq0/s400/IMG_4625.jpg" /></a></div><br />He's been getting much more curious about things and using his hands a lot more - SEE. He was quite proud of himself I think...and so he should be:<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-xAijeJj9Bp8/UFOCebPIb3I/AAAAAAAAAT8/hFufSnQRtvw/s1600/I%2Bswear%2Bit%2Bwasn%2527t%2Bme%2521%2B%2B8.28.12.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://3.bp.blogspot.com/-xAijeJj9Bp8/UFOCebPIb3I/AAAAAAAAAT8/hFufSnQRtvw/s400/I%2Bswear%2Bit%2Bwasn%2527t%2Bme%2521%2B%2B8.28.12.jpg" /></a></div>* What do you think of his handmade, visually stimulating bumper pads? I'm telling you I've never EVER been one to toot my own horn but darn it all if Ryan and all his conditions hasn't brought out a very creative, thinking outside the box side of me! Toot toot! :o)<br /><br />Cross your fingers we get a phone call from the hospital on Sunday saying come on in we have a bed for Ryan! <br /><br />Stay tuned...<br /><br /><br /><br /><br /><br /><br /><br /> <br /><br />Jen Quinlan-Bangildhttp://www.blogger.com/profile/13468233369422016017noreply@blogger.com0tag:blogger.com,1999:blog-847681409438089823.post-18003220407936816972012-08-27T17:54:00.001-07:002012-08-27T17:54:40.277-07:00It's all good...Okay, so it's been 1 month since my last post...that's better than 2 months right? The scary thing is that it feels like just yesterday when I posted last. I think we can all appreciate and agree that time and life is whizzing by way too fast!<br /><br />So what is new and what has changed...well actually it’s been going pretty great lately! I fear saying that out loud but there...I've done it!<br /><br />Ryan got a new (loaner) gait trainer - here he is with Quin and her tractor:<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-Q6ROXB6uycQ/UDwD6Wr-IOI/AAAAAAAAAQ8/LpzmZGl9nts/s1600/wheels%2B8.2.12.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="299" width="400" src="http://2.bp.blogspot.com/-Q6ROXB6uycQ/UDwD6Wr-IOI/AAAAAAAAAQ8/LpzmZGl9nts/s400/wheels%2B8.2.12.jpg" /></a></div><br />On July 17th, Ryan's endocrinologist called to let me know he would like to increase Ryan's thyroid meds (FINALLY - I have asked and requested this a few times but was always given the same answer - "he's in the normal range so let's just leave him for a bit"). Sure he's been in the normal range but it's been in the very low/normal range. There are many symptoms of low thyroid and there may be some of you reading this that already know about them. Below are just some of the symptoms that we've seen in Ryan that could be related to his low/normal levels (some of these could also be related to his other conditions/medications as well):<br /><br />* Constipation<br />* Fatigue<br />* Depression<br />* Low muscle tone<br />* Impaired cognitive function<br />* Inattentiveness<br />* Irritability<br />* Mood instability<br /><br />Since the increase and more so in the last week or so (along with reintroducing B6 back into his med/supplement regime) he has been on cloud 9! Not only has his mood improved but his cognition has also picked up. He's been actively reaching for his toys (hand/eye co-ordination has improved greatly). He's playing more. His strength and willingness to work has been so encouraging to see (on July 25th he started butt scooting a tiny tiny bit). Mostly though and yup, here come the tears...he seems to really know who I am. He's been much more responsive to me. Almost reaching up for me in a way when I ask him if he wants his bottle etc... The other day I went to get him from his nap...his back was to me against his crib. As I started talking to him he tilted his head back to look at me then reached up and back with his right arm/hand to find me! Oh what sweet sweet feelings and chills that gave me! <br /><br />Let's see what else has happened since mid July?<br /><br />Quin is potty trained!!! Wow she was as tough cookie with that one!<br /><br />Also our little potty goer's soccer season came to a close - something I think she was happy about. Each week we’d hear the same thing “I want to go home” or “I don’t like soccer”. Most weeks it was really hot and boy does she ever pink up and not do well in the heat! Here she is actually posing for her official soccer photo:<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-R4aK0oDa0vU/UDv2iTYfLZI/AAAAAAAAAN0/ncJBNeFXusM/s1600/quin-soccer-pose.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="400" width="280" src="http://2.bp.blogspot.com/-R4aK0oDa0vU/UDv2iTYfLZI/AAAAAAAAAN0/ncJBNeFXusM/s400/quin-soccer-pose.jpg" /></a></div>On the bright side she met a couple of little girls who will be attending the same nursery school as her (same mornings)! It’s hard to say for sure just yet if she has been cursed with my shyness. We’ve had her in a couple of things now to socialize her a bit and give her her own little “life” outside of what she has to deal with at home, I just hope it’s been enough to prepare her for school life. I feel sick even saying that! Like any Mom I’m dreading being away from her…it’s only twice a week for 2.5 hours at a time (and occasionally I will be with her as a duty parent). But ugh, how my heart breaks and stomach drops at the thought of walking out of that building without her and leaving her to fend for herself and be with strangers. I know they won’t be strangers to her or me for long but still…. It’s going to be awful but good (for her) at the same time. Let’s change the subject!!! *sniff*<br /><br />The results of Ryan’s hip and shoulder x-rays both came back clear! Phew! There is still some clicking and popping so I’m hoping its “normal” and nothing comes of it…perhaps as he grows it will lessen. <br /><br />He had his 4th ERG while on Vigabatrin performed on July 27th. I’ve emailed the ophthalmologist and we are now just anxiously awaiting the results of the exam which will tell us how his retina’s are doing while on his anti-convulsant meds.<br /><br />One day near the end of July, I got the mail and there was a letter and cheque from the government regarding the disability funds Ryan is entitled to. The next thing I knew I was sitting in the van in front of the mailboxes crying…good lord! I think it was just the fact that it was official that the government says Ryan is disabled (hate that term) and they are saying here you go…you’re going to need this. I guess they are kind of right. Ryan has a $195 therapy jumper hanging from the ceiling (he’s way too big for his infant jumper – but loves to jump so we needed something) and he also has a pair of semi-orthopedic shoes coming from the Netherlands soon that require final payment. These should help his ankles from collapsing when standing and fingers crossed help get him up and walking. He’s doing well with regular physiotherapy but these shoes will give him just a touch of support where he needs it most.<br /><br />On the 31st of July he had his check up with the developmental pediatrician. She was pleased to see how much stronger his core had become since she last saw him in December 2011. His head control was also something she was happy with. She does however, put him at about the level of a 6 – 8 month old baby (he is currently 22 months old). This didn’t come to a shock to either Jeff or I but it’s still hard to hear. I was hoping for more of a 6 – 10 month old range and at times he does seem a bit older than just 8 months old so I’m going with what I see and not what one doctor says after spending less than 1 hour with him.<br /><br />Jeff has had a couple of things done recently. One is some very special 'art work' on his left arm...the kids names in script and braille:<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-KCjGDv7xMx0/UDwRAj9Lq9I/AAAAAAAAARY/epjYizjE2Cw/s1600/imagejpeg_2.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="298" width="400" src="http://4.bp.blogspot.com/-KCjGDv7xMx0/UDwRAj9Lq9I/AAAAAAAAARY/epjYizjE2Cw/s400/imagejpeg_2.jpg" /></a></div><br />Then in early August, he went in for the old “snip snip”. A year ago (July 17, 2011 specifically) I finally came to terms with the fact that we would have to stop at 2 babies. I had been going back and forth since the appointment when we learned about Ryan’s vision. Our plan was always to have 3 (heck if I was younger and we were richer I’d love to have gone for 4) – which is why Quin and Ryan are so close in age…we wanted them all as close in age as possible. If things had gone as planned #3 would have been born last month. After Ryan’s Infantile Spasms diagnosis Jeff too admitted that having a 3rd would be unfair to not only that baby but to both Quin and Ryan. As time went on it became apparent just how much time both our little ones need given all that has happened and changed since "that phone call" on January 19, 2011 and that we wanted to give them anything and everything we could to make life as easy as we can for them. We did however give it another year just to be certain. The night before he went in he was working a late shift. I put Ryan to bed first as usual and gave him extra hugs and cuddles soaking in the bit of baby-ness that remains in him. Next was Quin…we did our usual routine but spent a little more time rocking in the chair together before I tucked her in. Before I knew it she was fast asleep in my arms and I was a sobbing disaster trying so hard not to wake her. The last time she fell asleep in my arms she was 9 months and 9 days old (it was the very last night she was breastfed). The fact that it happened the night before her Momma was to be cut off (no pun intended haha) from future babies didn’t go unnoticed. <br /><br />Feeling a little sappy and got to looking at some old photo's...here are my little ones as babies.<br /><br />Quin at 3 weeks old: <br /><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-P_zuOrPTPIQ/UDv3_y-PxXI/AAAAAAAAAOY/dKoyQz4XnRw/s1600/3%2Bweeks%2B..%2BMay%2B12%252C%2B2009.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://4.bp.blogspot.com/-P_zuOrPTPIQ/UDv3_y-PxXI/AAAAAAAAAOY/dKoyQz4XnRw/s400/3%2Bweeks%2B..%2BMay%2B12%252C%2B2009.jpg" /></a></div><br />Ryan at 3 weeks old:<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-HjeQRrmatak/UDv4AIYrw8I/AAAAAAAAAOk/CbLE9x9K6h0/s1600/Ryan%2B-%2B3%2Bweeks%2B-%2B11.05.10.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://1.bp.blogspot.com/-HjeQRrmatak/UDv4AIYrw8I/AAAAAAAAAOk/CbLE9x9K6h0/s400/Ryan%2B-%2B3%2Bweeks%2B-%2B11.05.10.jpg" /></a></div><br />Quin - almost 2 months old:<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-jUFEZ7265wI/UDv5zT14PnI/AAAAAAAAAOw/HqKCFgX6UQ0/s1600/IMG_3345ab.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="250" width="400" src="http://3.bp.blogspot.com/-jUFEZ7265wI/UDv5zT14PnI/AAAAAAAAAOw/HqKCFgX6UQ0/s400/IMG_3345ab.jpg" /></a></div><br />Ryan - just over 2 months old (it was when I was taking these pictures that I started to REALLY wonder about Ryan's vision as he would not look at me at all and it was also when I started admitting that his eyes seemed a little off):<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-SyHNwZYRYVQ/UDv8P9_NhwI/AAAAAAAAAO8/KTGJny4T-QA/s1600/IMG_0570.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://2.bp.blogspot.com/-SyHNwZYRYVQ/UDv8P9_NhwI/AAAAAAAAAO8/KTGJny4T-QA/s400/IMG_0570.jpg" /></a></div><br /><br />On August 17th, Ryan finally had his allergist appointment. He’s a little bit irritated by cats it seems but clear on a lot of other stuff so that was good to get done and out of the way. It was definitely one of his better doctor appointments!<br /><br />Last week was his check up with the endocrinologist to go over his latest blood work and overall check up. His thyroid levels are up at a more comfortable range. The endo though still says even though he was a little low before he was still in the normal range. Okay that’s fine and all but we all (myself, Jeff, the whole family – I’m sure even Quin) have noticed how much happier and “with it” he has been since the upped dose. I told him as much but got the typical ‘cover their butt’ response. I swear most of these doctors really don’t know what they are doing half the time and just try this or that till they get a good result! Dr. “V” did say that Ryan was an impressive looking specimen. Ummmm thanks? Haha… Which he followed up with "he really is quite gorgeous"….THANKS! I mean look at this face:<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-pVYjHk0wbB4/UDv2-zyR17I/AAAAAAAAAOA/wKrqaU2tsIc/s1600/IMG_4521.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="400" width="300" src="http://2.bp.blogspot.com/-pVYjHk0wbB4/UDv2-zyR17I/AAAAAAAAAOA/wKrqaU2tsIc/s400/IMG_4521.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-8Kr7v3rXf4k/UDv3AB_lslI/AAAAAAAAAOM/KAZOUy5fwYM/s1600/Ryan%2B-%2B22%2Bmonths%2B-%2B8.15.12.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="400" width="300" src="http://3.bp.blogspot.com/-8Kr7v3rXf4k/UDv3AB_lslI/AAAAAAAAAOM/KAZOUy5fwYM/s400/Ryan%2B-%2B22%2Bmonths%2B-%2B8.15.12.jpg" /></a></div><br />These were taken on the 1 year anniversary we got the call confirming he had Infantile Spasms (he really doesn't seem to care - haha):<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-7HIA643imck/UDv_MoyEqwI/AAAAAAAAAPY/jtfyIPQzzPc/s1600/Loves%2Bhis%2Bcrib1.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://4.bp.blogspot.com/-7HIA643imck/UDv_MoyEqwI/AAAAAAAAAPY/jtfyIPQzzPc/s400/Loves%2Bhis%2Bcrib1.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-bQAtCrNaTqE/UDv_NHBCgwI/AAAAAAAAAPk/vIQV32p13zw/s1600/Loves%2Bhis%2Bcrib2.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://4.bp.blogspot.com/-bQAtCrNaTqE/UDv_NHBCgwI/AAAAAAAAAPk/vIQV32p13zw/s400/Loves%2Bhis%2Bcrib2.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-hm21J3byRnU/UDv_N-tsZ7I/AAAAAAAAAPw/Mh1lwfeEy0M/s1600/Loves%2Bhis%2Bcrib3.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://1.bp.blogspot.com/-hm21J3byRnU/UDv_N-tsZ7I/AAAAAAAAAPw/Mh1lwfeEy0M/s400/Loves%2Bhis%2Bcrib3.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-9SHeOm8rQKU/UDv_OJUMgEI/AAAAAAAAAP8/y0IF9Fcz-3o/s1600/Loves%2Bhis%2Bcrib4.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://2.bp.blogspot.com/-9SHeOm8rQKU/UDv_OJUMgEI/AAAAAAAAAP8/y0IF9Fcz-3o/s400/Loves%2Bhis%2Bcrib4.jpg" /></a></div><br />Most recently (this past weekend) we went up to visit my sister, her family and their brand new pool! Neither of them had been in a real pool before so we were really excited to get them in it! Quin loved it! Ryan was a little preoccupied with the ear cover I made him wear to keep water out of his ears (tubes). I cut him some slack and took it off and he came alive! For one it wasn't there to drive him nuts and for another he could hear. It's a pretty heavy duty fabric and no doubt cut him off from the world just a bit!<br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-X4CDajlHGEQ/UDwC4_UifTI/AAAAAAAAAQY/CVdgkZQs3uA/s1600/I%2Blike%2Bthis%2Bbetter%2Bwithout%2Bthat%2Bstupid%2Bhead%2Bband%2521%2B8.26.12.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://4.bp.blogspot.com/-X4CDajlHGEQ/UDwC4_UifTI/AAAAAAAAAQY/CVdgkZQs3uA/s400/I%2Blike%2Bthis%2Bbetter%2Bwithout%2Bthat%2Bstupid%2Bhead%2Bband%2521%2B8.26.12.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-0y5VlvqpUY0/UDwC5YIyB0I/AAAAAAAAAQk/cn7Qo0kq2GM/s1600/Quin%2Bwater%2Bwings%2B8.26.12.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="400" width="299" src="http://2.bp.blogspot.com/-0y5VlvqpUY0/UDwC5YIyB0I/AAAAAAAAAQk/cn7Qo0kq2GM/s400/Quin%2Bwater%2Bwings%2B8.26.12.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-XcKa9SvDMWA/UDwC6PgxMII/AAAAAAAAAQw/blNui6u4RWg/s1600/Mommy%2Band%2Bher%2Bbabies%2521%2521%2B8.26.12.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://4.bp.blogspot.com/-XcKa9SvDMWA/UDwC6PgxMII/AAAAAAAAAQw/blNui6u4RWg/s400/Mommy%2Band%2Bher%2Bbabies%2521%2521%2B8.26.12.jpg" /></a></div><br />Going forward the month of September brings a lot of stress - another eye appointment with the ophthamologist, Quin starting nursery school, the video EEG and trying to keep and make time for all of Ryan's appointments mixed in with getting Quin to and from nursery school... Oh it's going to be a tricky road in these next few weeks! Right now though all I'm concerned with is that Ryan has been comfortable and happy for a good 3 maybe even 4 weeks now. <br /><br />It's been awesome!<br /><br /><br /><br /><br /><br /><br />Jen Quinlan-Bangildhttp://www.blogger.com/profile/13468233369422016017noreply@blogger.com0tag:blogger.com,1999:blog-847681409438089823.post-36375771087123790082012-07-16T06:32:00.000-07:002012-07-16T06:32:44.026-07:00Day 9 and finally feeling fine! (WARNING: TMI)<div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-qCBR-TZmab8/UANfNMOC3TI/AAAAAAAAAMU/4Tuzj1ptUGE/s1600/Big%2Bboy%2B-%2B7.15.12.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="372" width="400" src="http://4.bp.blogspot.com/-qCBR-TZmab8/UANfNMOC3TI/AAAAAAAAAMU/4Tuzj1ptUGE/s400/Big%2Bboy%2B-%2B7.15.12.jpg" /></a></div><br />Holy crap (pun intended)! Never have I been more obsessed with poop than I have in the last week! <br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-cV7TwAxgU3Q/UAQVqIMr5QI/AAAAAAAAANk/yBW7pjy4fsM/s1600/Save%2Bme%2B-%2B7.13.12.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://2.bp.blogspot.com/-cV7TwAxgU3Q/UAQVqIMr5QI/AAAAAAAAANk/yBW7pjy4fsM/s400/Save%2Bme%2B-%2B7.13.12.jpg" /></a></div><br />On Saturday, July 7th, poor Ryan started crying and feeling uncomfortable. He had a few very mushy poops...the next day he had 4-5 mushy and watery poops. By Monday, he didn't poop at all and was screaming. Tuesday more yucky poops and crying, Wednesday no poops and didn't want to eat lunch...loads more screaming! :o( Given all that Ryan has to deal with I don’t mess around with anything that seems off with him. Here we come again ER (both his ped and family doctor don't work on Wednesdays)!<br /><br />My Mom came with me while my Mother-in-law stayed at home with Quin. Each time I leave the house with Ryan and not Quin (which is frequent due to all his therapy and doctor appointments) I drown in guilt. She so young and so sweet and doesn't completely understand it all but she is quickly catching on to the whole situation. Trying to explain everything to a 3 year old though isn't exactly easy. Anyway, got a little side tracked. Thank goodness my Mom came with me...Ryan was in a bad bad state shortly after we got there and I was so happy to have the extra help (especially from my Mommy..haha). It was so sweet seeing him cuddle into his Grandma's arms. <br /><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-C7AKMOCHRck/UAQVjCX3GpI/AAAAAAAAANY/l9HOxCAMcuA/s1600/Cuddles%2Bwith%2BGrandma%2B-%2B7.11.12.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://2.bp.blogspot.com/-C7AKMOCHRck/UAQVjCX3GpI/AAAAAAAAANY/l9HOxCAMcuA/s400/Cuddles%2Bwith%2BGrandma%2B-%2B7.11.12.jpg" /></a></div><br />On the way to the hospital Ryan (the little bugger) was actually making happy cooey noises...even when we got to the ER and were checking in they asked the reason we were there. I told them excessive inconsolable crying and screaming. I swear she looked at content little Ryan, then me and sighed. Off we went to the first waiting room to have the triage nurse look him over. When we were called he was still fairly ok but very quickly fell apart and it just got worse from there. Off to ER waiting room #2 we went. It was a bit of a wait but we were eventually taken to a bed and waited for the doctor.<br /><br />I again went through his medical history and medications and the reason we were there. By this time Ryan was incredibly upset and while my heart was breaking for him seeing him in such pain, I was glad that it was happening in front of the doctor so she could see just how awful he was feeling. They ran some standard “tests”, pulse, oxygen levels, temperature etc… They wanted to test him for a UTI which meant a catheter. This isn’t a fun process to have done once for an adult…never mind TWICE when you’re only 20 months old. They couldn’t get any pee out of him on the first try so they put a bag on him but after an hour and a half of not peeing they had to catheter him AGAIN! :o( It was god awful for him (as you can imagine). The UTI test came back negative. He was also sent for tummy x-rays which according to the ER doctor showed significant ‘fecal loading’ as she called it. But the pediatrician who saw him a couple of days after the ER visit said that upon looking at the xray he didn’t see any significant back up. Ugh, this is all so confusing and frustrating…why can’t we just be given a nice simple straight answer!!! We were in the ER for 5.5 hours 1:00pm - 6:30pm (ish). Ryan generally naps between 1pm and 4pm but he absolutely refused to sleep (can't blame him with all the poking and proding he was enduring). Here he is totally exhausted:<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-scP_nmqG7jE/UAQVa24ktvI/AAAAAAAAANM/iQffVUYDf3U/s1600/Trying%2Bto%2Bsleep%2Bin%2Bthe%2BER%2B-%2B7.11.12.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="300" width="400" src="http://2.bp.blogspot.com/-scP_nmqG7jE/UAQVa24ktvI/AAAAAAAAANM/iQffVUYDf3U/s400/Trying%2Bto%2Bsleep%2Bin%2Bthe%2BER%2B-%2B7.11.12.jpg" /></a></div><br />What we did know is that Ryan was a little backed up but that he was also having “overflow” issues (diarrhea). Really? Both at the same time…the poor poor babe he just can’t catch a break. The ER visit was on a Wednesday, for the next few days he continued to cry, scream and literally writhe in pain. Everything was done to make him comfortable, Tylenol, Advil ,warm packs on his tummy, upping his Polyethelene Glycol (poop softening meds). Nothing was working. On the weekend we decided to try switching him to lactose free milk (what sucks is that for some reason 3.25% doesn’t come lactose free so he’s only getting 2%)…that didn’t seem to do much. At the advice of a few wonderful people I switched him to just plain old rice cereal (maybe he has an issue with gluten). Within a day he was doing much better!!! Yesterday (Sunday) he was smiling and being his silly, goofy little self…he even had a little giggle! The atmosphere around the house was much improved knowing Ryan was once again comfortable and content. <br /><br />So as it stands right now we’re sticking with lactose free milk and hope to find some gluten free baby cereal (he still doesn’t really know how to chew so he’s still on puree’s and cereals). What isn’t fair though is that I read that in order to find out if you really do have an issue with gluten you need to be eating the things that make you feel crappy in order to get a diagnosis. So I may have to switch him back to his regular cereals if we get him tested. For now though I’m going to go with what seems to be working for him because holy lord this child needs a break! I’ve put in a call to the pediatric allergist that he’s been referred to in hopes of getting his August 17th appointment bumped up and a request has been put in to have him put on the cancelation list for his GI appointment which isn’t happening until October 4th.<br /><br />In the middle of all this craziness I also took him to the family doctor on Friday to get a requisition for his hips. When you have low muscle tone it's common to have issues with your joints. Ryan's hips seem to be clicking and popping more than normal lately so he's being send for xrays and ultrasounds on both hips.<br /><br />Today is Monday...fingers crossed for a drama free week!Jen Quinlan-Bangildhttp://www.blogger.com/profile/13468233369422016017noreply@blogger.com0tag:blogger.com,1999:blog-847681409438089823.post-78462981954521830602012-07-05T11:18:00.000-07:002012-07-05T12:55:02.888-07:00Where did my baby go for 2 weeks?On June 14th, Jeff and I celebrated our 4 year wedding anniversary (it's also the day we met 15 years ago). Been a busy 4 years let me tell ya! <br /><br />Christmas 1997 (dorks - haha):<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-K4cXejanY9M/T_XUFyeYQcI/AAAAAAAAAL4/m8AgaoAkrnY/s1600/Jen%2B%2526%2BJeff%2B1%2B-%2B1997.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="320" width="202" src="http://3.bp.blogspot.com/-K4cXejanY9M/T_XUFyeYQcI/AAAAAAAAAL4/m8AgaoAkrnY/s320/Jen%2B%2526%2BJeff%2B1%2B-%2B1997.jpg" /></a></div>Honeymoon 2008 (much cooler here - hehe):<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-v0CBM3Ozt0Y/T_XVLBEW2wI/AAAAAAAAAME/-hazYor2S2o/s1600/Picture%2B012a.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="238" width="320" src="http://2.bp.blogspot.com/-v0CBM3Ozt0Y/T_XVLBEW2wI/AAAAAAAAAME/-hazYor2S2o/s320/Picture%2B012a.jpg" /></a></div><br /><br /><br />On the 15th, we took Quin to African Lion Safari while my Mom and both my sisters spent the day with Ryan. The 3 of us had a lot of fun together and it was so good for Quin to have just us to herself for part of the day.<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-akEbz_xFS9k/T_XJ_fmX2FI/AAAAAAAAAK0/TgaaPSLiXMo/s1600/IMG_4302.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="240" width="320" src="http://4.bp.blogspot.com/-akEbz_xFS9k/T_XJ_fmX2FI/AAAAAAAAAK0/TgaaPSLiXMo/s320/IMG_4302.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-R6EF1L0C4D8/T_XJ_hKuBEI/AAAAAAAAALA/zeSlufOrDUE/s1600/IMG_4372.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="240" width="320" src="http://4.bp.blogspot.com/-R6EF1L0C4D8/T_XJ_hKuBEI/AAAAAAAAALA/zeSlufOrDUE/s320/IMG_4372.jpg" /></a></div><br />On the 16th, my parents babysat the kids so Jeff and I could go to Odessyo in Toronto (kind of like Cirque du Soliel but with horses) for our anniversary. It was an amazing show and I was biting my lip real hard to keep from crying at the end...it was just such a gorgeous show. Little did I know at the time that just minutes later I would be shedding tears for a different reason. As we were rushing out of the show to get to the car and beat the crowd out of the parking lot Jeff tells me he has a few missed calls....my heart literally stopped when he said it was from home. I grabbed my phone and I too had a couple of missed calls. Shaking like a leaf I called home as fast as I could. My Mom told me she thinks Ryan has been having seizures. Poof, "good feelings gone". She told me he'd been having some head bobs (Infantile Spasms alert) and had some weird movements and stiffening of his legs and arms. With feelings of dread in our stomachs we hit the road and of course got stuck in the oh so fun and typical traffic on the Gardner and QEW - I hate both highways and hated them even more on this day!!! When we got home Ryan seemed ok but with everything that had been going on with him lately and all the video's, calls and e-mails I had been sending to the pediatrician and neurologist I'd had enough...we were taking him to the ER!<br /><br />We checked in and waited and waited (longest I've had to wait in the ER with him)! They finally called his name and took us to a newer area of the ER, one we hadn't been to before. They put us in a nice "little room" with lights that we could actually turn out! It had a reclining chair which Jeff promptly tested out and a nice bed which I stretched out on along side Ryan. As soon as we were comfy a nurse came to get us and told us the doctor on the other side of the ER would be better equipped to deal with the reason we were there for. So we got up and went into the brightly light icky side of the ER and waited some more. A very nice resident came over and took Ryan's medical history and watched him for a while. He was doing some head bobs but at this point the bobs were mostly all with his head falling backwards (not TOO scary). Then the main doctor came over...by this point it was about 9pm and well past Ryan's bedtime. The doctor checked him over and asked some questions then went to go contact the neurologist on call. Not long after he was gone, Ryan's head bobs became much stronger and more frequent and he started making the "IS" face as his head would fall forward (kind of a spaced out what the h*ll just happened scared look). It was the first time I had seen "the look" since last summer when he was first diagnosed. I freaked and told Jeff to go get the doctor quick. The 3 of them came rushing back and watched Ryan. The main doctor said that yes those look like Infantile Spasms head bobs. We were devastated to say the least. I was frantic and with tears welling up I said "Help him!!!"..."What can we do?!?!?". It was so painfully heartbreaking to watch him. Jeff looked like he was about to puke and I was a puddle as we watched this horrific form of epilepsy literally eat away at and destroy our sweet little boy's brain. The neuro on call suggested we up Ryan's Vigabatrin dose from 750mg in the morning to 1,000mgs and keep his PM dose of 750mg the same. She said all the notes and information from our ER visit would be on Ryan's neurologist desk for Monday morning and to call first thing to get an appointment for him. We took all this in and hit the road still not knowing what to think but knowing what we felt...which wasn't a pretty feeling.<br /><br />This was taken 2 days after we were in the ER:<br /><br /><iframe width="560" height="315" src="http://www.youtube.com/embed/9z781E3veNU" frameborder="0" allowfullscreen></iframe><br /><br />The next day we upped Ryan's meds and waited... One thing I had forgotten about was how Ryan was when he was first started on Vigabatrin last summer. His sleep instantly went out the window, he was spastically hyper all day and as time went on he became very moody and irritable. Most of those side effects had subsided over time or at least became less of an issue...or maybe it was that we had become so used to them that it was just the "new norm" in our house...not sure! June 17th was the day his meds were upped, within a couple of days Ryan's nights were a disaster...he barely slept...naps weren't much better. On the 20th before things started to get real bad for him he held onto and fed himself a 'veggie straw'...first time he's really actively fed himself and chewed consistently (aside from the piece of cheese he got in his mouth a few weeks ago)! <br /><br /><iframe width="560" height="315" src="http://www.youtube.com/embed/UV6OZ4KeAcU" frameborder="0" allowfullscreen></iframe><br /><br />Within a week he was crying inconsolably and was what I can only describe as psychotic. <br /><br />This was taken during the peek of his "crazy" time. The video doesn't do it justice and he may just look like he's kind of freaking out. But he's got his jaw clenched so tightly I was fearful he might break it. His hands keep fisting up and he's shaking. He's also making some non-Ryan/crazy noises. It may not look as scary in the video...in person though it was quite terrifying to watch.<br /><br /><iframe width="560" height="315" src="http://www.youtube.com/embed/OGNC5fuh9lo" frameborder="0" allowfullscreen></iframe><br /><br />Most anti-seizure meds have crazy side effects and Vigabatrin is no exception. Some kids have no problems, some like Ryan get just about every evil side effect the drug has to offer! I had sent video's to his neurologist, who by now had told me that he didn't feel Ryan was experiencing a return of his Infantile Spasms but that he will send him for a 6 hour day time VEEG (video EEG) just to be on the safe side. Wouldn't you know this won't be happening until SEPTEMBER!!! A couple of the video's I had sent were of Ryan completely freaking out. He was so crazy with rage, fear and sadness that I honest to God could not hold him at times..he was out of control. The neuro's thoughts: Oh it's just behavioural. WHATEVER! I don't know how many times I have told these doctor's that I am his mother...I spend 24/7 with him...I know what is normal and what is not. What I am seeing is NOT normal...he is not misbehaving or having a temper tantrum...something is not right!!! I was able to speak to a neurology nurse (not his regular one) and explained to her what was happening with Ryan. She said that if Dr. ___ didn't feel it was spasms or seizures and that Ryan was in so much distress to lower him back down to his regular dose. While I was worried about him seizing I was putting my faith in the doctor's and nurses and lowered his meds. Within about 5 days he was his old self again. The intense and on going crying spells and the crazy psycho fits were gone (behavioural my a** - damn him for not listening to me and believing me). This past Monday night was the first time I had heard him laugh in over 2 weeks. Amazing how such a sweet and beautiful sound can bring a person to tears! The other thing that is helping Ryan feel more comfortable is the addition of Zantac to help with a bit of relux issues and vitamin B6 to help combat the irritability and mood swings caused by his seizure meds. <br /><br />So painfully sad (this is the face we saw A LOT of during these 2 weeks):<div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-h8pMczccVaw/T_XP0pySkYI/AAAAAAAAALQ/qvRd5X3mOBg/s1600/IMG-20120629-00062.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="240" width="320" src="http://4.bp.blogspot.com/-h8pMczccVaw/T_XP0pySkYI/AAAAAAAAALQ/qvRd5X3mOBg/s320/IMG-20120629-00062.jpg" /></a></div><br />Literally exhausted from crying (and in this he is still crying/moaning):<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-7B0YgFI6Kto/T_XQFcqYFoI/AAAAAAAAALc/wYzBbrEL0uc/s1600/IMG-20120629-00070.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="240" width="320" src="http://1.bp.blogspot.com/-7B0YgFI6Kto/T_XQFcqYFoI/AAAAAAAAALc/wYzBbrEL0uc/s320/IMG-20120629-00070.jpg" /></a></div><br />Finally feeling a bit better and enjoying his guitar app on the iPad:<div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-SqrDGcc8LUQ/T_XQPkAeuYI/AAAAAAAAALo/e1qgOEdgY4I/s1600/IMG-20120629-00079.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="240" width="320" src="http://4.bp.blogspot.com/-SqrDGcc8LUQ/T_XQPkAeuYI/AAAAAAAAALo/e1qgOEdgY4I/s320/IMG-20120629-00079.jpg" /></a></div><br />Where Ryan "went" during those 2 weeks only he will know. I just hope for his sake he never has to go there again!Jen Quinlan-Bangildhttp://www.blogger.com/profile/13468233369422016017noreply@blogger.com2tag:blogger.com,1999:blog-847681409438089823.post-63425522640686994892012-06-21T12:11:00.001-07:002012-06-21T12:11:47.791-07:002 months worth of updates!Ok so I admit (again)...I suck at blogging! I has been almost 2 months since my last post and THAT is highly unacceptable and will not happen again! It has obviously been a very busy couple of months (hence the delay) so I will try to condense all of Ryan's happenings into one "little" post! Wish me luck...<br /><br />First here's a few pictures:<br /><br />Happy boy!<br /><a href="http://1.bp.blogspot.com/-v5-gcltr7wM/T-NrfgcBnMI/AAAAAAAAAJY/mr-NCRXfRQA/s1600/IMG_4131.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="320" width="240" src="http://1.bp.blogspot.com/-v5-gcltr7wM/T-NrfgcBnMI/AAAAAAAAAJY/mr-NCRXfRQA/s320/IMG_4131.jpg" /></a><br />Standing on grass for the first time!<br /><a href="http://1.bp.blogspot.com/-BIEhrCmPeQk/T-NrutepNxI/AAAAAAAAAJk/cGFxJFRQhMI/s1600/IMG_4135.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="240" width="320" src="http://1.bp.blogspot.com/-BIEhrCmPeQk/T-NrutepNxI/AAAAAAAAAJk/cGFxJFRQhMI/s320/IMG_4135.jpg" /></a><br /><br />She loves her brother...really she does!!!<br /><a href="http://3.bp.blogspot.com/-goXxWrOLaao/T-NsJwUemPI/AAAAAAAAAJw/u7eeeaOAgA4/s1600/IMG_4175.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="240" width="320" src="http://3.bp.blogspot.com/-goXxWrOLaao/T-NsJwUemPI/AAAAAAAAAJw/u7eeeaOAgA4/s320/IMG_4175.jpg" /></a><br /><br />Chillin' in his gait trainer from Erinoak Kids!<br /><a href="http://1.bp.blogspot.com/-5lU-T2T86PQ/T-NsecVisJI/AAAAAAAAAJ8/8EzJCuzNtPU/s1600/IMG_4226.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="320" width="240" src="http://1.bp.blogspot.com/-5lU-T2T86PQ/T-NsecVisJI/AAAAAAAAAJ8/8EzJCuzNtPU/s320/IMG_4226.jpg" /></a><br /><br />Quin's first soccer "game"!<br /><a href="http://4.bp.blogspot.com/-Nc5vcWbEilM/T-Ns6ln8ZTI/AAAAAAAAAKI/xjWDZGd6fOg/s1600/IMG_4264.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="320" width="240" src="http://4.bp.blogspot.com/-Nc5vcWbEilM/T-Ns6ln8ZTI/AAAAAAAAAKI/xjWDZGd6fOg/s320/IMG_4264.jpg" /></a><br /><br /><a href="http://4.bp.blogspot.com/-r5ihT_qj0NQ/T-Ns63_rqII/AAAAAAAAAKU/TtyMVxO2tO8/s1600/IMG_4257.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="240" width="320" src="http://4.bp.blogspot.com/-r5ihT_qj0NQ/T-Ns63_rqII/AAAAAAAAAKU/TtyMVxO2tO8/s320/IMG_4257.jpg" /></a><br /><br />So when I left off it was mid April and Ryan was really getting into the swing of things with coming up into a sitting position. He's mastered this feat and it's impossible to keep him down now! Problem is that even though he can get up nice and easy...he falls down nice and hard. He's still not able to get his arms and hands out to catch himself so he pretty much hits the deck like a ton of bricks unless someone is there to catch him (which isn't always the case). <br /><br /><b>April 18:<i></i></b> Sedated ERG at Sick Kids. Ryan barely slept at all the night before so the sedation hit him very quickly and they didn't even use all the drug. He ended up sleeping for 6 hours off and on after the test which of course screwed up his days and nights again so back on Melatonin he went. And so began the wait to find out if his retina's are still suffering damage from his seizure meds.<br /><br /><br /><b>April 21:<i></i></b> My awesomely sweet and strong willed Quin turned 3 years old! For more than half her life she has dealt with all the insanity that comes with having a sibling with special needs and I fear it's really starting to get to her. I won't go into detail or over explain things as I tend to have a habit of doing. All I can say is she is a very intuitive, sensitive and brilliant little girl.<br /><a href="http://4.bp.blogspot.com/-YUDLuRzwRaQ/T-NgY0b39TI/AAAAAAAAAIU/jC8LIhA-_eg/s1600/Quin%2Band%2Bher%2Bcake%2B-%2B4.21.12-a.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="320" width="251" src="http://4.bp.blogspot.com/-YUDLuRzwRaQ/T-NgY0b39TI/AAAAAAAAAIU/jC8LIhA-_eg/s320/Quin%2Band%2Bher%2Bcake%2B-%2B4.21.12-a.jpg" /></a><br /><br /><br /><b>April 22:<i></i></b> I walked into Ryan's room to find him sitting up in his crib - amazing and very freaky to see! <br /><br /><b>April 23:<i></i></b> After almost 15 years, Jeff has officially said "see ya later" to shift work. He has taken on a new roll (still within "the force") that allows him to work Monday - Friday day time hours! It...is...awesome and so is he for doing it! It's made life much less stressful around the house for the kids to have both of us around every night and every weekend. It gives us all (especially Jeff) a lot more structure to our lives and enables us to be a "normal" family! Something we've just started doing (early June) is that he is doing 1 "afternoon" shift a week so that he can take Ryan to one of his PT appointments a week. This gives me some Mommy/Daughter time with Quin and she gets to see someone other than me take Ryan out the door for this or that appointment. <br /><br /><b>April 29:<i></i></b> Sat in a shopping cart for the first time (thanks to his Hugga Bebe)!<br /><a href="http://4.bp.blogspot.com/-VZgjCxkoED4/T-NlQP2GvTI/AAAAAAAAAIk/xT0jtf7m8eU/s1600/Sitting%2Bin%2Bshopping%2Bcart%2B-%2B4.29.12.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="240" width="320" src="http://4.bp.blogspot.com/-VZgjCxkoED4/T-NlQP2GvTI/AAAAAAAAAIk/xT0jtf7m8eU/s320/Sitting%2Bin%2Bshopping%2Bcart%2B-%2B4.29.12.jpg" /></a><br /><br /><b>May 2:<i></i></b> Enjoying his visually stimulating Pack N Play!<br /><a href="http://3.bp.blogspot.com/-IiMcPG_8tFU/T-NlhfxMOSI/AAAAAAAAAIw/umiTNHxkHlw/s1600/Visual%2Bsensory%2BPNP%2B-%2B5.2.12.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="240" width="320" src="http://3.bp.blogspot.com/-IiMcPG_8tFU/T-NlhfxMOSI/AAAAAAAAAIw/umiTNHxkHlw/s320/Visual%2Bsensory%2BPNP%2B-%2B5.2.12.jpg" /></a><br /><br /><b>May 7: <i></i></b> I took Ryan to see the pediatrician as he had been having massive meltdowns once again. Lots of very intense, loud and prolonged screaming fits. Thankfully he was in the middle of a meltdown during our appointment...sure it made it difficult to have a conversation but at least he got to see it first hand. He said he would get in touch with the neurologist (because once again god forbid I should be able to get the guy to talk to me himself). I did call both the neurologist and endocrinologist and was told to 'start' with the ped...sigh.<br /><br /><b>May 12:<i></i></b> Ryan had a 30 minute "stoned" episode. I videotaped some of it once I snapped out of my heart stopping, sickening moment of panic and sent it off to his neurologist along with a very detailed description of what had happened. I swear it seemed like a seizure to me (I'm still convinced something was up) but the neuro said he just looked "tired". Fine...ok. The only reason I'm not banging down their door is that it hasn't happened since and he was a little tired so maybe...<br /><br /><b>May 14: <i></i></b>Tube surgery follow up and hearing test. We discovered that Ryan's left tube was blocked with leftover fluid from the surgery and his ear drum had filled back up due to the blockage. This probably explained why he was collapsing so much and being extra off balance during his PT sessions. His therapist and I weren't sure if they were "drop attack" seizures (yes, it meant another call to the neurologist). The ENT doc gave us some antibiotic drops for his ears to help break up the fluid and sure enough 10 days later he was all cleared out and no longer dropping to the floor and falling. STRESS!!! The hearing test he needed done didn't go so well. Ryan is very developmentally delayed and doesn't respond to a lot of things the way normal babies and toddlers do so they sent us off to another hospital for a more specialized test (basically all that meant was there were 3 people doing the test instead of 1). That too was a bomb so they said lets give him more time to develop and see what happens. We go back on November 14. I know he can hear so I'm not 'overly' worried but I guess it's a question of how well. Also, on this day Ryan had a PT/OT session before the doctor appointments and then right after the doc appts he had to go for his standard (every 3 months) blood work. I won't go into the mix up that happened at the hospital with that one but I will say that Ryan's lovely pediatrician called me on the long weekend from his home to let me know that his blood work came back fine. I seriously love that guy and pray he never ever retires!!!<br /><br /><b>May 15:<i></i></b> Quin tickled Ryan's feet saying "tickle tickle tickle" in her sweet and excited little voice. As happens a very large percentage of the time Ryan did not respond or react...Quin turned to me looking totally dejected and so innocently said, "He's not working". BREAK MY HEART.<br /><br /><b>May 17: <i></i></b> Ryan got a piece of cheese into his mouth!!! Not sure if it was a fluke but it really did seem like he was working hard to get it in there!<br />Here it is as it was happening!!!<br /><a href="http://4.bp.blogspot.com/-MKxE_KlXssU/T-NwJDn-96I/AAAAAAAAAKk/kJc5qxDrQJk/s1600/First%2Btime%2Bgetting%2Bfood%2Binto%2Bhis%2Bmouth%2521%2B%2B5.17.12.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="240" width="320" src="http://4.bp.blogspot.com/-MKxE_KlXssU/T-NwJDn-96I/AAAAAAAAAKk/kJc5qxDrQJk/s320/First%2Btime%2Bgetting%2Bfood%2Binto%2Bhis%2Bmouth%2521%2B%2B5.17.12.jpg" /></a><br /><br /><b>May 29: <i></i></b> Finally got the word from the doctor at Sick Kids letting us know that Ryan's retina's are NOT showing damage from his anti-convulsant Vigabatrin (as previously reported after his January ERG). Such fantastic news!!!<br /><br /><b>May 31:<i></i></b> Quin helps Ryan learn how to use his gait trainer. Since he doesn't have the vision or muscle power to understand the concept she's giving him a little boost!<br /><a href="http://1.bp.blogspot.com/-wrlxWbaq9YU/T-NnVbsuPuI/AAAAAAAAAJI/fV2uqJnebRE/s1600/IMG-20120531-00773.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="240" width="320" src="http://1.bp.blogspot.com/-wrlxWbaq9YU/T-NnVbsuPuI/AAAAAAAAAJI/fV2uqJnebRE/s320/IMG-20120531-00773.jpg" /></a><br /><br /><b>June 3:<i></i></b> Both of our cats got out of the house at night (we didn't know until the following morning). I opened the door and Clyde came running in...Sully remained missing for 24 hours. Turns out he was under our neighbour's back porch. Here he is the night after he was found totally content in my lap! Punk better not ever do that again - he added just a few more grey hairs to mine and Jeff's head!<br /><a href="http://4.bp.blogspot.com/-IfgODQr6f10/T-Nm3-rzYwI/AAAAAAAAAI8/6abBP3f4jlI/s1600/IMG-20120604-00792.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="240" width="320" src="http://4.bp.blogspot.com/-IfgODQr6f10/T-Nm3-rzYwI/AAAAAAAAAI8/6abBP3f4jlI/s320/IMG-20120604-00792.jpg" /></a><br /><br /><b>June 5:<i></i></b> The family doctor prescribed a topical antibiotic for the back of Ryan's ear. He constantly plays and pulls on his ears (hello autism alert - he's got LOTS of autistic traits...LOTS) and gets a little too rough at times. His left one got mangled and it ended up infected but quickly cleared up thanks to the antibiotic.<br /><br /><b>June 6: <i></i></b> This day started off great as it was Quin's 2 year anniversary of walking and the 1 year anniversary of when Ryan tracked an object for the first time. Then during breakfast Ryan had a strange episode (wasn't the first time) where his face got all twisted and contorted. Obviously I instantly think seizure but I also thought Tourette's. I got a little video of it and sent it off to the pediatrician and neurologist. The ped said he isn't worried about what he saw...still waiting to hear from the neuro - shocking I know. If the video doesn't show up in the blog here is the link: http://www.youtube.com/watch?v=Xm5qT7C3j2Q<br /> <br /><iframe width="560" height="315" src="http://www.youtube.com/embed/Xm5qT7C3j2Q" frameborder="0" allowfullscreen></iframe><br /><br />I'll end here and get to work on the roller coaster early/mid June updates - it's been a doozy!Jen Quinlan-Bangildhttp://www.blogger.com/profile/13468233369422016017noreply@blogger.com0tag:blogger.com,1999:blog-847681409438089823.post-65378500879353978022012-04-14T19:54:00.001-07:002012-04-14T20:21:00.578-07:00Busy busy busy...<div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-DuRxegvj7JI/T4oxJDGe2FI/AAAAAAAAAII/xP28YwCTxjY/s1600/toothbrush%2B4.8.12.jpg" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="320" width="293" src="http://3.bp.blogspot.com/-DuRxegvj7JI/T4oxJDGe2FI/AAAAAAAAAII/xP28YwCTxjY/s320/toothbrush%2B4.8.12.jpg" /></a></div><br /><br />Tomorrow Ryan turns 18 months old! Holy cow - where has the time gone? Ah yes, therapy, hospital and doctor appointments! Haha... I'm not complaining! Oddly enough I actually enjoy all of these appointments as it gets me out of the house and socializing with adults! The other day purely out of curiosity I tallied up all of Ryan's appointments from the doctor to therapy to special testing appointments. In 2011, he had a total of 151 appointments and so far less than 4 months into 2012 he has had 68 appointments! Kind of nuts but I know there are lots out there that have it way busier than we do. The sad thing is that due to being so busy and having 2 little ones under the age of 3yrs, it has made it difficult to maintain friendships. On the flip side of things I know they too are busy with their lives whether it be with work or their own families. Regardless, it has been a little heartbreaking as we experience the destruction I guess you could call it of most of our friendships. Since Ryan's diagnosis we have in a way felt and become isolated from those we were once close to. I'm not placing blame, as you can see things at this end are just a little ridiculous and well everyone is just too busy these days I guess. Still...it really really sucks!<br /><br />I have thankfully been blessed through the internet. Facebook which was once a means strictly to stay up to date on my friends and acquaintances lives has now also become a great source of comfort and acceptance with the support groups I have joined. I have formed some great online friendships with wonderful Mom's who themselves are trying to find their way through this tricky terrain of the special needs word. I love my friends (who I miss terribly) and family and would be lost without their hands on support but being able to connect with Mom's and some Dad's who are living this life 24/7 really and truly is something else. These Mom's get it. They know how it feels to be walking though the grocery store watching other families go about their shopping trips with ease and happiness. They understand when you say you hate going to the doctor's office and see these other kids your child's age functioning normally while their Mommy or Daddy stares at your child with a look of curiousity trying to figure out just exactly what is wrong with your child. They get it when you say you love going to therapy appointments because it's the only place you and your child feel accepted and comfortable. From Michigan to the UK - thank you for being there and making me feel less alone.<br /><br />A little update on Ryan's eyes since his ear tube surgery last week. His pupil's are still dilated but they are at least finally responding to direct light. I did end up taking him to the ER on Easter Sunday morning. Funnily enough the doctor working was the same one we saw a couple of weeks ago when we were there last! He was able to get a hold of the ophthamologist on call who was familiar with Ryan's eye doctor and the type of eye drops he uses for certain things. He assured us that the drops used on Ryan were safe and in fact are a long lasting type. Well geez, it would have been nice to know this ahead of time!!! When he's had drops in the past his pupils are back to normal by the end of the day. These particular drops can last up to 2 weeks! What I've been worried about is that he goes back to Sick Kids on the 18th for another sedated ERG where he'll have drops placed in his eyes again for another exam. After speaking to Mac a few times and Sick Kids the other day I have been told not too worry. If his pupil's are still dilated by then they won't put drops in. If he does require drops his eyes are not in any danger from being dilated again so soon after the long lasting drops. What I'm also not crazy about is that he's being sedated twice in 2 weeks! Unfortunately, it is necessary and there's not much we can do about it. <br /><br />This past week appointments have been made for another hearing test and a follow up with the ENT to get his ears/tubes checked out. We also received a referral in the mail for his GI appointment to get his insides all checked out. That however isn't happening until October. Actually that appointment is the day before his next sleep deprived EEG. This EEG will determine his wean from Vigabatrin. We meet with the neurologist the following week for that discussion. I really really don't want him to come off the drug but I know he has too. It's possible though he may have to come off of it sooner if his ERG from next week shows more retina damage. Time will tell...<br /><br />Here are a few pictures from this week (FYI - the picture at the top of this post is Ryan with his FAVOURITE toy! It's a vibrating/light up toothbrush...I think there is a picture of him with one in an earlier post - he just loves the things)!<br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-Bp7scR60CYg/T4owGSzvUiI/AAAAAAAAAH8/J1dojhIKJLY/s1600/IMG_3849.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="240" width="320" src="http://1.bp.blogspot.com/-Bp7scR60CYg/T4owGSzvUiI/AAAAAAAAAH8/J1dojhIKJLY/s320/IMG_3849.jpg" /></a></div>Sitting in his "true love" the Jumperoo checking out his new book from the Easter Bunny!<br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-grywt0meFeg/T4otdRZTTvI/AAAAAAAAAHY/KUVkJ7my8CQ/s1600/Picnic%2Btable%2B4.9.12.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="240" width="320" src="http://1.bp.blogspot.com/-grywt0meFeg/T4otdRZTTvI/AAAAAAAAAHY/KUVkJ7my8CQ/s320/Picnic%2Btable%2B4.9.12.jpg" /></a></div>Checking out the picnic table! So amazing to see him actually reaching for things!!!<br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-KIXMMHzPFLk/T4ototOWeHI/AAAAAAAAAHk/rkeOnAZ3iYc/s1600/Vision%2Btherapy%2B4.10.12.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="240" width="320" src="http://1.bp.blogspot.com/-KIXMMHzPFLk/T4ototOWeHI/AAAAAAAAAHk/rkeOnAZ3iYc/s320/Vision%2Btherapy%2B4.10.12.jpg" /></a></div>Doing a little vision/OT stuff. The black board in the background (thank you Dad!) are to help block out any visual confusion so he can concentrate on what's in front of him.<br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-vS4VARZIDJw/T4ot7kJlR4I/AAAAAAAAAHw/E_1EVX5h220/s1600/Sitting%2B4.14.12.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="240" width="320" src="http://4.bp.blogspot.com/-vS4VARZIDJw/T4ot7kJlR4I/AAAAAAAAAHw/E_1EVX5h220/s320/Sitting%2B4.14.12.jpg" /></a></div>Sitting up like a big boy in his Pack N' Play! Still VERY new to see him sitting like this and so very very exciting!!!<br /><br />I just created a You Tube account (check me out eh! haha) and am hoping I can post the link in here with no cyber trouble...here we go! Gggggrrrrrr it's not working! Please copy and paste the below link into your address bar if you wish to see the video! Sorry, I guess I'm not quite as technically savvy as I thought I was...haha!<br /><br />http://www.youtube.com/watch?v=lr_B8HpWODUJen Quinlan-Bangildhttp://www.blogger.com/profile/13468233369422016017noreply@blogger.com0tag:blogger.com,1999:blog-847681409438089823.post-55951412963885887292012-04-07T18:52:00.000-07:002012-04-07T18:52:10.181-07:00Tubes and TearsI know my last post was titled “What a week”…this one hasn’t been much different! Ryan had his ear tube surgery on Thursday but of course the poor thing came down with Quin’s cold that very morning! This kid has the worst luck I’m telling you! I called the number they gave me should he get sick, they said if he doesn’t have a fever to bring him in and they’ll check him out. So off we went. <br /><br />When we got to the hospital and checked in with “Same Day Surgery” they gave me a mask to put on Ryan (who was already in the middle of a meltdown from not feeling well). As you can see he really wasn’t feeling to great or happy with the days events so far (note the little tear). <div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-r330Y4cDzLE/T4Drb3R2mcI/AAAAAAAAAHA/bzgXvDCiWh8/s1600/mask%2B4.5.12.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="240" width="320" src="http://4.bp.blogspot.com/-r330Y4cDzLE/T4Drb3R2mcI/AAAAAAAAAHA/bzgXvDCiWh8/s320/mask%2B4.5.12.jpg" /></a></div><br />We were sent to the very last bed in the unit as far away from everyone as they could get us. After a lot of waiting a nurse came to take his temperature (no temp in his arm pit but a slight one via his ear). Off she went to get someone else. An anesthesiologist resident came to see him…she asked TONS of questions and listened to every square inch of his chest/back. Thankfully he had fallen asleep in my arms by then and was quiet so she was able to get a good listen to his lungs and chest. After she left, we were alone for a while when another nurse came to see us with yet more questions. SHE then left and a little while later someone came to take us to the OR but we still didn’t know if they were going to go ahead with it. The head of anesthesia had to check him out as well as the doctor doing the surgery. I mean really can nothing just go easy for Ryan…I was so frustrated for him. Eventually both the doctor and head of anesthesia came to see us and conferred with the resident and nurse. It was decided that they would go ahead as planned! YEAH! So I suited up in my hair cap thingy and the full zip up body suit so that I could carry him into the OR and stay with him while they gassed him. After a quick kiss and a few tears they dragged me away from him. Anyone who has been through the ear tube surgery thing knows that it’s a very quick procedure. I was in the waiting room for about 20 minutes when the doctor came to tell me that everything went well and that they had to get a lot of wax out before they could even get to his ear drums…poor guy. When the cut into his drums a lot of thick fluid came flowing out. It’s a wonder Ryan could hear at all! Not long after, Ryan’s ophthalmologist came to the waiting room as well. Sorry I should back up a bit. At Ryan’s last eye appointment, the doctor said he would like to take a good look at Ryan’s eyes when he comes in for his tube surgery since he’ll be sedated. He gave me some drops to put in his eyes so they would be dilated for the surgery the next day. So the doctor came to see me shortly after the ENT doctor did and said that Ryan’s optic nerves are as expected (still about 50%-60% of the size they should be) but that the good news was that while he is far sighted it’s not bad enough to require glasses (they are only about a +2 or +2.5). LOVE getting good news! Eventually a nurse came to take me to Ryan. Before I even got to the recovery room I could hear him screaming. When I came around a corner I saw a couple of nurses wrestling with him and his IV. They lowered his bed and told me I could climb up and cuddle with him. I could tell just by holding him that he was in a whole lot of pain and very stressed out (never mind that his piercing screams told me that already). They said he had a big dose of Tylenol but after some time it was obvious he wasn’t able to settle so they gave him a bit of Gravol. Some time had gone by and he was still writhing and screaming. It was getting difficult to hold him. They decided to try a touch of morphine and after a little bit and a whole lot of bouncing and shushing from me he did eventually settle and even managed to sleep for a bit. Off to the next recovery phase/room we went where he was allowed to have a bottle and another sleep.<div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-A1K3xCiwgLM/T4DsPqTRgGI/AAAAAAAAAHM/s2WIrwr0yWk/s1600/time%2Bto%2Bgo%2Bhome%2B4.5.12.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="240" width="320" src="http://2.bp.blogspot.com/-A1K3xCiwgLM/T4DsPqTRgGI/AAAAAAAAAHM/s2WIrwr0yWk/s320/time%2Bto%2Bgo%2Bhome%2B4.5.12.jpg" /></a></div><br /> Jeff had come to pick us up by then (and brought me a yummy sandwich!) and whisked us back home where we got Ryan all nice and cozy in his sleeping bag and crib. <br /><br />Today is now Saturday. Ryan’s eyes were dilated with the drops on Wednesday and his pupils are STILL dilated. We're a bit worried as it's been 70 hours now. Telehealth wasn’t able to help me so if by tomorrow morning they are still dilated we’ll be heading to the ER. <br /><br />A little off topic note with this post. Tonight in the bath Quin kept trying to put one of her little toys in Ryan’s hand. As always when anyone touch’s or holds Ryan’s hands or arms he instantly snaps his hand away. It’s a major sensory issue with him. Quin kept looking at me when it happened and had this sad, confused little look on her face coupled with that funny, confused little laugh that kids and even adults do when they are unsure of something. I do my best not to cry in front of the kids but this just sent me over the edge especially since it has been such a stressful day (also “afternoon shift” aka I’m on my own for 8 nights in a row). I gave Quin a big hug and told her Ryan’s hands were just a little sore and tried to get Ryan to cooperate so she’d feel better. He wanted nothing to do with having anything in his hand so I just let him be and distracted Quin with something else. She is one very tuned in kid when it comes to people’s emotions etc… I’m sure a lot of kids are like that or maybe even all kids but whatever the case I’m glad she’s the way she is and I hope it continues. She’s got a big heart and that’s going to be so important as her relationship with Ryan grows as they get older. A long time ago not long after all of this began I tried explaining to Quin what was going on with Ryan. She was just a little over 2 years old and obviously not able to grasp the magnitude of what was happening so I tried explaining in a way that she might understand. I simply said to her that Ryan’s eyes were broken and he couldn’t see as well as she could. Her sweet and simple response was “Mommy fix it”. Like I said I try not to cry in front of the kids but that just did it. I hugged her so tight while I was sobbing and didn’t say anything…I mean what COULD I say. This is just something Mommy can’t fix. But man oh man we’re all doing everything in our power to make it as easy a situation as we can for both of them.<br /><br />I don’t want to end this post on a bad or sad note so here’s some “good” news. In the last couple of days since Ryan’s surgery he has seemed much more alert and aware of what is going on around him. When he’s not crying from discomfort from his cold, teeth or ears he’s really been quite happy. It’s almost as if he’s feeling re-born. What I wouldn’t give to be inside his head, obviously to know what he can see and feel but to know what his hearing was like before the surgery and how things are for him now. We’ll just go with what we see on the outside and it all seems to be pretty darn good according to him!<br /><br />Happy Easter everyone!<br />Jen Quinlan-Bangildhttp://www.blogger.com/profile/13468233369422016017noreply@blogger.com0tag:blogger.com,1999:blog-847681409438089823.post-68556868486151271742012-03-29T11:51:00.003-07:002012-03-29T13:03:05.356-07:00What a week!!!Well actually it's more like what a COUPLE of weeks! Poor Ryan had been in a world of hurt for quite a few days. I chalked it up to severe teething pains as his upper right molar was trying to bust through the gums. Then someone mentioned a possible 18 month growth spurt since he's right around that age. Made total sense to me as Ryan always seems to hit his spurts early. So I looked it up and and found that those with brain abnormalities have a much more intense reaction to this particular growth spurt. There is apparently a massive brain development at this time making things very uncomfortable and stressful for Ryan. Slap on that nasty old molar and his 4 canine's also rearing their ugly heads and welllllll...things were horrifically awful for my poor babe. He would scream, sob and squirm constantly throughout the day. Tears would stream down his cheeks. <br /><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-4jPGZYxCTQk/T3SrAMsv-bI/AAAAAAAAAGQ/Tjw9AQa1uIs/s1600/IMG-20120325-00240.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="240" width="320" src="http://2.bp.blogspot.com/-4jPGZYxCTQk/T3SrAMsv-bI/AAAAAAAAAGQ/Tjw9AQa1uIs/s320/IMG-20120325-00240.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-i0uOpfZZkfQ/T3SrA6zoSmI/AAAAAAAAAGc/qh2OkRVJ8TY/s1600/IMG-20120325-00241.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="240" width="320" src="http://2.bp.blogspot.com/-i0uOpfZZkfQ/T3SrA6zoSmI/AAAAAAAAAGc/qh2OkRVJ8TY/s320/IMG-20120325-00241.jpg" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-Rgs_S_d3wuE/T3SrBPce0EI/AAAAAAAAAGo/d4Of0J-kURo/s1600/IMG-20120325-00243.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="240" width="320" src="http://1.bp.blogspot.com/-Rgs_S_d3wuE/T3SrBPce0EI/AAAAAAAAAGo/d4Of0J-kURo/s320/IMG-20120325-00243.jpg" /></a></div>I couldn't handle seeing him hurting so badly so I took him to the ER this past weekend. They took some x-rays and ultrasound of his lungs, liver, pancreas, kidneys, gall bladder, bladder, bowels etc...basically everything! It all looked fine (so good to hear that everything internal is working for him). They did however discover a tiny bit of poop back up and prescribed him a little something to help. Well it does seem to be helping him, however his clothes, diapers and blankets are suffering the consequences...haha...as is my washing machine!!! He's also getting Advil for his teeth as Tylenol just wasn't cutting it. He's also still getting his iron, thyroid and antiepileptic meds. Given everything he's taking I decided to wean him off his melatonin and he's doing pretty ok without it. He's never been a great sleeper (since his been on Vigabatrin) and I know melatonin doesn't KEEP you asleep it just helps you FALL asleep which has never really been an issue (knock on wood!). It would be great to get him off the iron too as it's turned his teeth into an awful grey colour which you can sort of see in the above pictures. But obviously the supplement is essential to his health so who cares about a few stained teeth (well...ALL his stained teeth)! He'll be going for his routine thyroid blood work in another month or so so I'll have the pediatrician include an iron check as well.<br /><br />So for the last few days I'd say Ryan's discomfort has improved...hard to say if it's the Advil, the fact that his molar finally popped through a bit or because he's pooping more! Right now I don't care about the reason I'm just happy that he's feeling a bit better! <br /><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-XAZ5Z95WuR4/T3St--nKO6I/AAAAAAAAAG0/pGd1nPsiMWU/s1600/IMG-20120325-00247.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="240" width="320" src="http://4.bp.blogspot.com/-XAZ5Z95WuR4/T3St--nKO6I/AAAAAAAAAG0/pGd1nPsiMWU/s320/IMG-20120325-00247.jpg" /></a></div>Now we just have to hope that he stays healthy as next week he goes for his ear tube surgery at Mac. We're so anxious to see if the tubes will improve his hearing and if it does, will he begin to babble?!?! How we crave hearing his sweet little voice make new noises. I do think he's been trying to make new sounds and I can only hope that the tubes will allow him to build on that!<br /><br />Now for the GOOD, GREAT and MIND BLOWING fantastic news!!! On Monday, March 26th around 4:00pm, Ryan got himself up into a sitting position from the floor!!! It was a HUGE feat for him physically and cognitively! My Mom was just about to leave after watching Quin for me while I had Ryan at the dentist (to check his swollen gums and teeth stains)...I was watching him from the kitchen doing his rocking back and forth in his semi-crawling position. All of a sudden he sat back on his heels a bit, started to twist his body and wiggle his legs around...then in the slowest of all motions he kept twisting and getting higher and higher!!! All I remember saying is, "oh my god, oh my god" as I rushed over to give him the tiniest bit of support so he didn't topple over on his face but he did ALL the work himself! It was by far one of these most amazing and surreal things I have ever witnessed!!! I'm so glad my Mom was there to experience it with me! We cried and laughed and cried some more! Poor guy though I was so excited and proud that I scooped him up a little too quick as I was squealing and therefore gave him quite a scare...his little lip came out and he sniffled a bit but was ok after some extreme lovin'! My goodness even just typing about it makes me get goosebumps all over again! He's our little fighter for sure and is seeking revenge on those that say "he will never..."!!!Jen Quinlan-Bangildhttp://www.blogger.com/profile/13468233369422016017noreply@blogger.com0tag:blogger.com,1999:blog-847681409438089823.post-36547269135602114112012-03-16T19:18:00.000-07:002012-03-16T19:18:59.127-07:00Finally an update!<div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-h4K4f3E7VW0/T2PuWS0ZPFI/AAAAAAAAAGE/1FDiZBvrPj0/s1600/IMG_3669.jpg" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="240" width="320" src="http://4.bp.blogspot.com/-h4K4f3E7VW0/T2PuWS0ZPFI/AAAAAAAAAGE/1FDiZBvrPj0/s320/IMG_3669.jpg" /></a></div><br />To those following this tiny little blog I'm so sorry for not posting anything in over a month. Between therapy, doctor and hospital appointments...illness's, little one's not sleeping well (at night and naptime) and seizure worries...I'm just plain tired and stressed out. Basically I get up do my insane running around and dealing with the daily events and then fall into bed Googling this or that that relates to Ryan stuff (which ultimately results in a fairly crappy sleep)!<br /><br />Since my last post, Ryan has been to the ENT at MacMaster. At this appointment he had an extreme amount of wax vacuumed out of his tiny little ear (just his right one). He actually clogged the vacuum twice...I know gross eh? not too mention probably very uncomfortable for Ryan! The doctor then told me that Ryan still has fluid in his ears. It's been an on going problem but usually only when he gets sick. This time he was healthy and the fluid is still there. Based on the fluid and some tests the had been run in the past by a different doctor it has been determined that Ryan has mild to moderate hearing loss. Given that he is already low vision you can imagine how he must be feeling and functioning (amongst other issues). The doctor feels that once the fluid is drained with tubes his hearing and possibly his speech SHOULD pick up (at this point - 17 months of age - Ryan does not babble). I was told that there is a 6 month wait list for ear tube surgery. I basically looked at the doctor like he was crazy and told him that is not acceptable given the circumstances to which he agreed and said he'd try to bump him up the list.<br /><br />Along with being told Ryan has mild to moderate hearing loss we also learned that his vision has also taken a blow. We knew that by choosing the drug Vigabatrin to control and treat his Infantile Spasms we would run the risk of damaging his retina's. It's one of the main and more serious side effects of the anti-convulsant. When he had his ERG done at Sick Kids we were told that his retina's had remained stable. What a relief we felt! However, in mid February we received a letter telling us something completely different. It seems Ryan has suffered some damage but we don't know exactly how much or what it means. He has an appointment with his regular ophthamologist on March 20th at Mac so we will be discussing this further. One thing we are still sticking to is the obvious...saving his brain is more important than saving his eyes so keeping him on Vigabatrin will more than likely continue until he is about 2 years old.<br /><br />A few weeks later Ryan's "emergency" EEG appointment had finally arrived. Oh my, the stress leading up to this test really can't be described in words. It was a sleep deprived EEG so you'd think Ryan would fall asleep as soon as he was given the opportunity...no, not this fella. He's not big into sleep anyway (thanks to Vigabatrin) but put him in a strange room in a physically uncomfortable situation and it's even worse. He did eventually sleep for 30 minutes in my arms but that wasn't without a whole lot of swaying, bouncing, rocking and patting...all of which I wasn't even allowed to do! The technician told me to keep myself and him as still as possible during the test...REALLY!?!?! She realized she had no choice but to let me do my thing, so as I'm giving Ryan some of my best tricks to get him to relax she had to type in everything I did on the computer so it would match up with what she was seeing on her computer screen. Finally he slept. So there we sat, me with my arms and back burning with fire (we've all been there eh?), Jeff sitting off to the side watching and wishing he could make this all just go away and the tech quietly chatting away with me while once again I sat there with my eyes burning a whole in the monitor watching Ryan's brain waves either staying nice and constant or suddenly spiking in mountainous waves. Jeff kept giving me the eye trying to get me to stop "reading" the monitor but those who have been through something like this know that it's impossible to tear your eyes away from it!<br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-icF9baweTk0/T2PtjVw46OI/AAAAAAAAAF4/tEuABN-bNrw/s1600/eeg.png" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="214" width="159" src="http://3.bp.blogspot.com/-icF9baweTk0/T2PtjVw46OI/AAAAAAAAAF4/tEuABN-bNrw/s320/eeg.png" /></a></div><br />The next day the neurologist's nurse called (after I left a slightly frantic message to call me asap), she had great news! His EEG wasn't showing any new activity and the activity at the back of his brain from his September EEG has actually improved! We don't know how much or what that means because God forbid we should be given more information than that but the good news is that this EEG looked better than the last one. I don't like being wrong...ever...haha...but in this case holy smokes was I ever happy to be wrong! I' m still not entirely convinced that there isn't anything going on but at least we have some small comfort that there is no new activity creeping up on him! <br /><br />When the EEG was completed the day before we popped into his eye doctor on the same floor to see if they had yet received his ERG report from Sick Kids...they had not. His neurologist apparently does have a copy so I'm hoping that through some more phone calls they will be given the report by the time our appointment arrives. After popping in there we headed down one floor to the ENT clinic to see if they had any news about Ryan's tube surgery. They had nothing to tell me other than he had not been put on their "urgent" list...WHAT!?!?!? Are you kidding me! I gave them a brief breakdown on Ryan and my conversation with the doctor. They assured me they would speak with the doctor and get back to me. The very next day we got the call that Ryan's surgery date had been book and will be happening just a few weeks from now!!! Dang I love when things go well!<br /><br />Jen Quinlan-Bangildhttp://www.blogger.com/profile/13468233369422016017noreply@blogger.com0tag:blogger.com,1999:blog-847681409438089823.post-8577773658526839772012-02-12T11:55:00.000-08:002012-02-12T12:06:14.155-08:00These are the 'easy' days...<div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-4uyePnvg3mE/TzgYxrr2nyI/AAAAAAAAAFU/mTzORNoUYF0/s1600/IMG_3536a.jpg" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="298" width="320" src="http://3.bp.blogspot.com/-4uyePnvg3mE/TzgYxrr2nyI/AAAAAAAAAFU/mTzORNoUYF0/s320/IMG_3536a.jpg" /></a></div><br /><br />I hope this post comes out making sense! My poor husband has been working "night" shift and in court during the day all this week. I therefore, have been holding down the fort as they say...not to mention my sanity!!!<br /><br />Last week I received a call from the neuro's nurse letting me know that her and the doctor viewed the video's I sent over. He didn't feel there was any rhythmic like motions in the 'new/strange' movements Ryan was making. He seemed to feel confident that it wasn't a new form of Infantile Spasms or any seizure like activity all. I believe him because I want to.<br /><br />One of the things I find so intimidating about our new life is that these are the 'easy' days. I could be wrong who knows. It's so hard not knowing what the future holds. Sometimes I wish I had a crystal ball to prepare us for what lies ahead. Other times I'm kind of glad I don't know. Ryan is almost 16 months old but physically, emotionally and mentally functioning at about 6 months old. Will he ever catch up? Right now it's easy because he still looks like a baby and feels like a baby. He'll be getting older and bigger though...will he still act like a 6 month old when he's 2, 4, 6 years old? As the neurologist has told us a couple of times Ryan will never be "normal". Can I tell you how much I hate that word...hate it with a passion! He may never be a typical little boy, teen, man. But I can't and try not to focus on that. I turned a corner a little while ago in my thought process in getting through all this and it was because of a blog I found. A Mom of a special needs child said that becoming a parent to a child with disabilities is kind of like if you were planning a trip to somewhere you've always dreamed about and ended up somewhere completely different. You've read all the books, packed your bags, you've dreamt about all the possibilities and excitement of going to Italy. Then, your plane makes a very, sharp and abrupt change of direction and you find yourself in Holland. You don't want to be in Holland. This isn't the place you had dreams of, this isn't what you were prepared for but then you look around and see all the beautiful things like tulips for instance. You soon realize that Holland is just as exciting and incredible as the place you originally thought you would be. You see the beauty and possibilities this new place has...you learn so many things and appreciate the 'trip' that much more. Reading that helped me give my head the shake it desperately needed. Instead of dwelling all the time on the future unknowns and the current fears and worries...I instead try to focus on how Ryan amazes me given all his disabilities. The other night he sat on his own for 42 SECONDS!!! When I feel how strong he's getting and when I see him watching and focusing on certain things it's an incredibly amazing feeling. Yes, I will still constantly be wondering and worry about Ryan's brain and it's function. Will he just have mild learning disabilities? Will he be autistic? Diagnosed with cerebral palsy? Will he be mildly or severely mentally challenged? Will he know his Mommy, Daddy and big sister love him so very dearly? Will he be able to love us back, say Mommy or wrap his sweet little arms around me in a hug? It's all so frightening and it's thoughts like that that I am forever pushing to the back of my head so I can get through each day. If I wasn't able to do that what kind of mother would Quin and Ryan have....?<br /><div class="separator" style="clear: both; text-align: center;"><a href="http://4.bp.blogspot.com/-7vanhty_G_g/TzgY_Wtk6_I/AAAAAAAAAFg/7LmAFgnuEBU/s1600/IMG_3541.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="240" width="320" src="http://4.bp.blogspot.com/-7vanhty_G_g/TzgY_Wtk6_I/AAAAAAAAAFg/7LmAFgnuEBU/s320/IMG_3541.jpg" /></a></div><br /><br /><br />Jen Quinlan-Bangildhttp://www.blogger.com/profile/13468233369422016017noreply@blogger.com2tag:blogger.com,1999:blog-847681409438089823.post-3510951760421635942012-02-06T19:16:00.000-08:002012-02-12T12:15:28.844-08:00New Seizures? Or Mommy Paranoia?<div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-SmYhRPAeT5k/TzCWznIUdyI/AAAAAAAAAE8/dZRvnWB2pEU/s1600/Handsome%2Blittle%2Bguy1.jpg" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="282" width="320" src="http://1.bp.blogspot.com/-SmYhRPAeT5k/TzCWznIUdyI/AAAAAAAAAE8/dZRvnWB2pEU/s320/Handsome%2Blittle%2Bguy1.jpg" /></a></div><br /><br /><br />So it's been a bit of an unsettling couple of weeks leading from January into February. I rushed Ryan to the ER after what I think may have been a possible seizure. My heart was in my toes on the way to the hospital and while they were checking him out. The doctor on call got a hold of Ryan's neurologist who said that he would set up an EEG for my little guy. This all happened on a Friday. On the following Monday, I called the neuro's nurse to find out where things stood with an appointment but she didn't have any information. This went on ALL WEEK...it was infuriating! I kept calling the nurse and the EEG unit but an appointment had not yet been made and a requisition hadn't even been sent yet...WHAT? Finally a week and a half after taking Ryan to the ER we are told that an appointment had been made...FOR MARCH 19th, 2012! Apparently the neurologist doesn't feel that what I described was something concerning. The fact that he hadn't done it again since makes him even more confident that Ryan is ok. <br /><br />Now in the last week or so Ryan has been making 'funny' faces and having a bit of body jerks (or are they just funny baby/toddler movements). The thing is once you have a child diagnosed with any type of epilepsy you question and panic about any new or strange movement they make. It's like being a parent to a volcano and you're just waiting for it to erupt. I don't know if Ryan's Infantile Spasms are breaking through his Vigabatrin medication and coming back in a different form or if I'm just being paranoid. Regardless, I just want someone to take me seriously! I took some video the other day and sent it off to his pediatrician who didn't feel it was anything to be worried about as Ryan didn't show any sign being "out of it". The video's have been sent to the neurologist and after a follow up call from myself I am waiting for a return phone call.<br /><br />On a brighter note, yesterday (just a day after the 1 year anniversary when Ryan was diagnosed with Septo Optic Dysplasia) he held and brought to his mouth a vibrating toothbrush that lights up! He's been holding and playing with things more lately and just recently started learning how to put things in his mouth. This toothbrush though is amazing! When he was on his tummy it rolled away from him...he reached out to get it...put it in his mouth and moved it back and forth a bit! <div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-oaSNDMx0gso/TzCWaN04ZVI/AAAAAAAAAEk/mWn5Prc9uSc/s1600/toothbrush.png" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="159" width="213" src="http://3.bp.blogspot.com/-oaSNDMx0gso/TzCWaN04ZVI/AAAAAAAAAEk/mWn5Prc9uSc/s320/toothbrush.png" /></a></div><br />He is awesome!Jen Quinlan-Bangildhttp://www.blogger.com/profile/13468233369422016017noreply@blogger.com0tag:blogger.com,1999:blog-847681409438089823.post-31167069437708172502012-01-28T21:23:00.000-08:002013-05-22T11:18:54.806-07:00Infantile Spasms (aka "The Monster)<div class="separator" style="clear: both; text-align: center;"><a href="http://3.bp.blogspot.com/-DcfqJGVSh5o/TyTXnjh20eI/AAAAAAAAAEY/KOwCFcNBebU/s1600/Ryan%2Bdiscovering%2Bchocolate%2Bicing%2BOct%2B15%2B2011.JPG" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="240" width="320" src="http://3.bp.blogspot.com/-DcfqJGVSh5o/TyTXnjh20eI/AAAAAAAAAEY/KOwCFcNBebU/s320/Ryan%2Bdiscovering%2Bchocolate%2Bicing%2BOct%2B15%2B2011.JPG" /></a></div><br />When Ryan hit his 9 month growth spurt he seemed to be having a hard time with his new size...not that he was a lot bigger but I thought maybe since he's a little extra sensitive to everything he's just really feeling this latest spurt. I couldn't have been more wrong and to this very day and for a long time to come I will be kicking myself very very hard for not listening to my Mommy gut instinct...I am an idiot.<br /><br />In early July, 2011, Ryan began collapsing forward. It was mostly his head. It would just fall and his chin would hit his chest. Maybe at the time he was having funny little jerks too but I probably never really thought much about it and chalked it up to funny little baby movements. Again, I couldn't have been more wrong. At a routine check up with his pediatrician he did the head bob thing. Right at that moment I was trying to explain to the doctor what was happening. When he saw what Ryan did he said, "I don't want to alarm you and do NOT go and Google this" (he knows me so well) "but it looks like it might be something called Infantile Spasms". Oh, ok I was thinking, that sounds kind of cute and harmless. This appointment was on a Friday at 11am. I stayed strong with avoiding the dreaded internet for almost 48 hours but as always my curiosity got the better of me and I had to check it out. What I read sent waves of nausea firing through me...worse probably than when we were told about Ryan's vision. I was numb, literally frozen in fear and didn't know what to do. I think either I called my sister or my sister had called me not long after I read what I had read and I just balled and balled. I remember telling her "don't tell Mom and Dad, let's just wait and see what I can find out". I didn't want my parents to be sent into the sickening spiral I had just entered. It was the weekend so I left very long, panicked, tear filled messages for the pediatrician and the neurologist. By Monday afternoon we were on our way to the children's hospital for an EEG and an appointment with the neurologist. Ryan was hooked up to this hideous machine with about 25 electrodes stuck to his fuzzy little head with gauze and tape all around to keep things secure. I then held him and he slept in a darkened room...just me, my baby and a wonderfully sweet technician who kept me talking the whole time while I watched my little guys brain waves blipping away on the monitor in front of me. When the test was done, the electrodes gently pulled away from his scalp and the glue washed away we headed down to the neurology department. The test showed Ryan had hypsarrhythmia.<br /><br />~~~~~<br /><br /><b>Definition:</b> <i> Hypsarrhythmia is an abnormal interictal pattern, consisting of high amplitude and irregular waves and spikes in a background of chaotic and disorganized activity seen on electroencephalogram (EEG), frequently encountered in an infant diagnosed with infantile spasms, although it can be found in other conditions. In simpler terms, it is a very chaotic and disorganized brain electrical activity with no recognizable pattern, whereas a normal EEG shows clear separation between each signal and visible pattern. </i><br /><br />~~~~~<br /><br />Basically hypsarrhythmia prevents the brain from being able to function at all. It is in a constant state of "fireworks" that go off every 1 - 3 seconds. It wasn't looking good. The neurologist asked us to video tape Ryan's head drop episodes and his spasm clusters and to e-mail everything to him.<br /><br />The next day was August 23, 2011...we got the call confirming Ryan had Infantile Spasms. <br /><br />~~~~~~<br /><br /><b>Definition:</b> <i>Infantile Spasms (West Syndrome) is an uncommon to rare epileptic disorder in infants. Compared with other forms of epilepsy, West syndrome is difficult to treat. To raise the chance of successful treatment and keep down the risk of longer-lasting effects, it is very important that the condition is diagnosed as early as possible and that treatment begins straight away. However, there is no guarantee that therapy will work even in this case. Insufficient research has yet been carried out into whether the form of treatment has an effect upon the long-term prognosis. Based on what is known today, the prognosis depends mainly on the cause of the attacks and the length of time that hypsarrhythmia lasts. In general it can be said that the prognosis is worse when the patient does not react as well to therapy and the epileptic over-activity in the brain continues. Treatment differs in each individual case and depends on the cause of the West syndrome (etiological classification) and the state of brain development at the time of the damage. The prognosis for children with idiopathic (no known cause) West syndrome are mostly more positive than for those with the cryptogenic or symptomatic forms. Idiopathic cases are less likely to show signs of developmental problems before the attacks begin, the attacks can often be treated more easily and effectively and there is a lower relapse rate. <br /><br />In other cases, however, treatment of West syndrome is relatively difficult and the results of therapy often dissatisfying; for children with symptomatic and cryptogenic West syndrome, the prognosis is generally not positive, especially when they prove resistant to therapy.<br /><br />Statistically, 5 out of every 100 children with West syndrome do not survive beyond five years of age, in some cases due to the cause of the syndrome, in others for reasons related to their medication. Only less than half of all children can become entirely free from attacks with the help of medication. Statistics show that treatment produces a satisfactory result in around three out of ten cases, with only one in every 25 children's cognitive and motoric development developing more or less normally.<br /><br />A large proportion (up to 90%) of children suffer severe physical and cognitive impairments, even when treatment for the attacks is successful. This is not usually because of the epileptic fits, but rather because of the causes behind them (cerebral anomalies or their location or degree of severity). Severe, frequent attacks can (further) damage the brain.<br /><br />Permanent damage often associated with West syndrome in the literature include cognitive disabilities, learning difficulties and behavioural problems, cerebral palsy (up to 5 out of 10 children), psychological disorders and often autism (in around 3 out of 10 children). Once more, the etiology of each individual case of West syndrome must be considered when debating cause and effect.<br /><br />As many as 6 out of 10 children with West syndrome suffer from epilepsy later in life. Sometimes West syndrome turns into a focal or other generalised epilepsy. Around half of all children develop Lennox-Gastaut syndrome.</i><br /><br />~~~~~~<br /><br />Due to the fact that Ryan already has brain abnormalities his "IS" is considered symptomatic. We were fortunate in that Vigabatrin (1 of 2 IS drugs) decreased his spasms within days. After 1 week of treatment his spasms has stopped. 2 weeks after treatment his EEG came back clear of the hypsarrhythmia but he still has epileptic activity at the back of his brain on both the left and right side putting him at risk for future seizures. This also increases his risk of Lennox-Gastaut Syndrome which I really don't want to get into right now.<br /><br />Vigabatrin has been a wonder drug for Ryan. The unfortunate and ironic thing about that drug is that it has a serious side effect of causing vision loss. Ryan, therefore has to go to Sick Kids regularly (every 3-4 months) for an ERG to test his retina's. If the results show retinal toxicity he will have to be weaned from the drug. However, I have already won one fight with the neurologist to keep him on the drug and will probably fight again to keep him on it if his retina's are being damaged. We obviously choose saving his brain over his eyes. <br /><br />So as things stand now (January 2012) we don't know and will not know for sometime what Ryan's outcome will be. His neurologist has told us that Ryan will not be "normal" as he grows up. I accept that now but it is still heartbreaking, maddening, frustrating and just about every awful feeling you could think and feel all summed up into one big ball of stress. We are holding onto the hope and positive thoughts as we watch Ryan slowly progress. If that should stop and he begins to regress...well we'll cross that bridge if we should happen to end up there.<br /><br />Jen Quinlan-Bangildhttp://www.blogger.com/profile/13468233369422016017noreply@blogger.com0tag:blogger.com,1999:blog-847681409438089823.post-31411144742255227812012-01-28T19:44:00.000-08:002012-02-15T11:23:06.477-08:00Therapies and "Inch"stones<div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-NgzFIp8gyCA/TyTAKhlIetI/AAAAAAAAAD0/eIfYQEeLITY/s1600/Loving%2Bthe%2Bswing%2521%2521%2521%2B%2B6.16.11.JPG" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="320" width="240" src="http://1.bp.blogspot.com/-NgzFIp8gyCA/TyTAKhlIetI/AAAAAAAAAD0/eIfYQEeLITY/s320/Loving%2Bthe%2Bswing%2521%2521%2521%2B%2B6.16.11.JPG" /></a></div><br />Having the conditions that Ryan has (low vision, low muscle tone, developmental delay) leads to having numerous doctors and therapists in our lives. He has an endocrinologist, an ophthalmologist, a neurologist, a regular GP and a pediatrician all who are seen fairly regularly. On his non-doctor and hospital visit days he has a physiotherapist, an occupational therapist, a speech therapist and a vision therapist (through the CNIB). When we don’t have therapy appointments he still has to work and that means Momma’s got some pretty strong arms these days. Handling Ryan (picking him up, holding him, moving him around, bathing him, doing his physio and basically teaching him how to play and be a baby etc…) are a wee bit tricky. He’s pretty much like a 24lb newborn a lot of the time due to his low muscle tone. He has however gained a lot of strength through therapy and it’s been so amazing working with him every day (except on the days that I make him cry with new or difficult exercises). Feeling his muscles “kick in” and figure things out honestly lifts me up so high that I can’t imagine any drug out there giving the same results. It truly is a rush! <br /><br />In the special needs world the term "meeting milestones" becomes "making 'inch'stones". These little ones go at their own pace and do things their own way. I am not known for being a patient person but being a parent in general teaches you to be pretty patient. Being a special needs parents REALLY teaches you the meaning of the word! Ryan has taught me that I'm capable of a lot more than I ever thought I would be...patience being one of the big ones! He has a lot holding him back...I read somewhere that vision is 85% of a baby's development. When you wipe out the vision aspect you really have your work cut out for you and Ryan has been working is butt off to get his revenge for what was taken from him before he was even born. For example, not only can he not see where the ground is (to judge how and when to get his hands out to protect himself from falling)...but he doesn't have the upper body muscle tone to get his hands and arms out in time (or to hold him up for that matter). Neurologically he's even more held back as a lot of the time he just can't figure out how to make what part of his body do a specific task. He has been learning though and in a way I understand how "SN" (special needs) parents say that these kids truly are a blessing as you really cherish the little things in life so much more. <br /><br />Here are some of the 'inch'stones Ryan has made through all the amazing and supportive therapists he has in his life.<br /><br />March 8, 2011 (4.5 months old): Held his head up (on tummy time) for 3 seconds!!! Yes, I cried...haha!<br />March 10, 2011 (4.5 months old): Focused on sparkly tissue paper (first time ever)...it was INCREDIBLE!!!<br />March 20, 2011 (5 months old): Rolled onto his tummy!<br />April 12, 2011 (almost 6 months): Giggled a short tiny quiet little giggle! One of the most beautiful sounds I'd ever heard!<br />June 6, 2011 (7.5 months): Tracked an object for the first time! A "light box" (thank you CNIB)! I nearly died right there!<br />June 17, 2011 (8 months): Really and truly looked at me for the first time and followed me with his eyes. Words still can not describe what I felt!<br />July 31, 2011 (9.5 months): He found his toes - yeah Ryan!!!! Sooooo exciting!<br />September 21, 2011 (11 months): Rolled from his tummy to his back!!!<br />October 22, 2011 (1 year old): Began pushing and rocking on his arms with his knees tucked under him..WOW!<br />January 9, 2012 (almost 15 months): Sat unassisted for 4 seconds!!!<br /><br />By the end of July I had hit a level of acceptance of Ryan's SOD diagnosis and was full steam ahead with positive thoughts. Seeing the work he puts in with his therapists and feeling it in him myself when I work with him .. I was feeling very encouraged for his future. Then...<br />Jen Quinlan-Bangildhttp://www.blogger.com/profile/13468233369422016017noreply@blogger.com1tag:blogger.com,1999:blog-847681409438089823.post-67580408723919923952012-01-20T12:53:00.000-08:002012-02-15T11:26:52.868-08:00The Diagnosis(s)<div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-C1Iu4hCgZhk/Txq3hBitnsI/AAAAAAAAADc/AzO1quyL6Qo/s1600/Being%2Bgoofy%2521%2B1.09.11.JPG" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="240" width="320" src="http://2.bp.blogspot.com/-C1Iu4hCgZhk/Txq3hBitnsI/AAAAAAAAADc/AzO1quyL6Qo/s320/Being%2Bgoofy%2521%2B1.09.11.JPG" /></a></div><br />As we headed into the uncertainty of what this next month would bring we couldn't leave the month of January without having even more bad news. On the 31st, just 3 days after learning about Ryan's vision we had to have my sweet and beloved cat Finn put down. It truly was terrible timing but is there ever really a good time for something like that? A few days after that sad event we headed to the hospital with Ryan for his MRI. I won't say what hospital we went to just that it was a fairly unpleasant experience. It taught us that we will only ever take our kids (Ryan specifically) to a pediatric hospital! For his MRI, a dye contrast had been ordered so they needed to get him hooked up to an IV. We didn't know at the time that Ryan had "tricky" veins...boy did we learn quickly and the hard way. He was 'stuck' 6 times with no luck. 3 times in his hands and 3 in his poor little head. He screamed and screamed...it took 3 of us to hold his tiny little 3 month old body down while a nurse poked away at his uncooperative veins. He could take no more...the nurse called down to the MRI unit and told them that they were not going to torture this poor baby anymore and they'd just have to do the MRI without the contrast. They thankfully agreed. Ryan was then sedated and taken down for his test. I will never forget how tiny he looked on that big MRI table and how heartbreaking it was to watch his little body slowly disappear into the 'tube'. After what seemed like a lifetime the test was over and he was back out of the 'tube' and in my arms sleeping away. We all went home to wait for the call. <br /><br />Later that evening as Quin, Jeff and I were sitting down at the dinner table the phone rang...it was time. The pediatrician gave us the news we didn't want to hear. Ryan had Septo Optic Dysplasia. <br /><br />I should back up a bit here. When we met with the neurologist a few weeks before, Jeff looked up SOD but didn't tell me he did and therefore also didn't tell me what it meant. So when we got the diagnosis I didn't know what to think (good or bad). When we got off the phone Jeff was upset and I was somewhat in la la land. I said to him, "How bad is it?" He looked at me and all he said was "It's bad.". Now those who know me well know that I am big into Google and looking up anything and everything relating to health conditions (I'm a little paranoid that way). For this I didn't go near the computer for weeks. I just didn't want to know. Irresponsible of me? Yes, probably. But I just wasn't ready to know or accept that something was really wrong with my baby. I just needed to stay in my happy little bubble of denial a little bit longer...it's where I felt safe. I can't remember exactly when I got the nerve to look up SOD but when I did I felt pretty sick and angry. <br /><br />If you don't yet know what Ryan's condition is all about then here you go:<br /><br />Septo-optic dysplasia (SOD) is a rare disorder characterized by abnormal development of the optic disk, pituitary deficiencies, and often agenesis (absence) of the septum pellucidum (the part of the brain that separates the anterior horns or the lateral ventricles of the brain). Symptoms may include blindness in one or both eyes, pupil dilation in response to light, nystagmus (a rapid, involuntary to-and-fro movement of the eyes), inward and outward deviation of the eyes, hypotonia (low muscle tone), and hormonal problems. Seizures may also occur. Intellectual problems vary in severity among individuals. While some children with SOD have normal intelligence, others have learning disabilities and mental retardation. Most, however, are developmentally delayed due to vision impairment or neurological problems. <br /><br /><div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-pDZ88UFRuE8/TzwG8poJNeI/AAAAAAAAAFs/9RoTnIyrJgg/s1600/IMG00032-20110516-1124.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="240" width="320" src="http://2.bp.blogspot.com/-pDZ88UFRuE8/TzwG8poJNeI/AAAAAAAAAFs/9RoTnIyrJgg/s320/IMG00032-20110516-1124.jpg" /></a></div><br /><br />In Ryan's case we knew at the time that he had a significant visual impairment but wasn't completely blind (he had at least light perception), we learned through the standard blood tests that are ordered from an an endocrinologist that so far his pituitary problems were only causing a low thyroid which is easily managed through daily medication. We also knew he had Hypotonia (floppy baby syndrome as it is also called). At the time he displayed no seizure like activity...that was soon to change down the road. The next step in determining his endocrine function was a 5 hour long cortisol and growth hormone test. This happened at 7 months and he was such a trooper. Every half hour he had blood taken through an IV that the pediatric nurse was miraculously able to get going from his head. It was a struggle to get the blood out however, they had to literally squeeze and pull the blood out of his head...this happened 8 times over the 5 hours. He was so exhausted physically when the day was done and I was exhausted emotionally. It was time to go home and wait for the call to tell us if he would require life long growth hormone shots and additional medication to keep his cortisol levels stable. If there were problems with either he would not grow and he would not be able to protect himself from infections. Thankfully his tests came back clear! Good news at last!Jen Quinlan-Bangildhttp://www.blogger.com/profile/13468233369422016017noreply@blogger.com0tag:blogger.com,1999:blog-847681409438089823.post-7407770485033998472012-01-17T20:00:00.000-08:002012-02-01T14:24:36.154-08:00January 2011<div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-c3R5XGw9SVY/TyTE3PTzp9I/AAAAAAAAAEM/fMqw9Wo4V8Q/s1600/IMG_0905crop.jpg" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="318" width="320" src="http://2.bp.blogspot.com/-c3R5XGw9SVY/TyTE3PTzp9I/AAAAAAAAAEM/fMqw9Wo4V8Q/s320/IMG_0905crop.jpg" /></a></div><br />Jeff, Ryan and I met with the pediatrician at the end of December but the little guy was so tired he just slept through the entire appointment and the doctor was therefore unable to properly assess him. We returned a month later and again Ryan was quite sleepy. The doctor asked us to take some video of Ryan tracking objects as well as some tummy time shots and to send them over via e-mail. The next day I got "the call". It was January 19, 2011 a day I will never ever forget. The doctor started off saying what a great job we did getting the video etc... I remember thinking he sounds so relaxed and ok with the video. Everything must be ok...nothing is wrong with Ryan...no, not my baby. His next words and those there after caused such a reaction throughout my body that I still don't know how I remained standing. He said, "I have some concerns"...he then went on to say he was setting up appointments for a cranial ultrasound, an MRI of his brain and appointments with a neurologist and an opthamologist. He also said that he wanted to come to the house the following day to examine Ryan. When was the last time you can remember a doctor making a house call? Pure terror had griped every single molecule in my body. Jeff was on "nights" and fast asleep up in bed oblivious to what was taking place just one floor below. I called my Mom...I'm not even sure she could understand anything I was saying through my tears. I then had no choice but to go wake my sweet baby boys Daddy and share the news I was just told. <br /><br /><b>January 21:<i></i></b> <i>Neurologist appointment</i> - We were ushered into a clinic room and spent time with a resident who asked us countless questions about Ryan. About an hour after walking into the room the neurologist came in followed by 4 students all who were so giddy and excited to be learning something new...all who were clueless to the fact that Jeff and I were doing everything we could not to puke from fear all over their annoying little clipboards. The neuro asked us some questions, did a very through exam of Ryan and then sat down to talk with us. He told us he felt Ryan had a condition called Septo Optic Dysplasia. Jeff and I sat there with tears of fear and stress in our eyes and dense looks on our faces. We weren't told much really. The neuro didn't elaborate on the condition as he needed further testing done in order to give a firm diagnosis. Understood but at the time Jeff and I were clinging to every word he was saying waiting for him to give us some sense of relief or comfort. Instead I was in such a state of confusion and terror that I asked such questions like "Is Ryan going to die?". All he could say to us was, "Take him home and love him". Seriouisly, that is exactly what he said to us. Jeff and I just clung to each other sobbing in that damn cold, unfeeling clinic room not knowing what to think. We walked out of the neurologist office literally numb and unable to speak. Four days later we laid our 3 month old Ryan down on the ultrasound table and watched the technician probe around the soft spot on his sweet bald little head taking pictures...he slept through the entire process. <br /><br /><b>January 28<i></i></b> - <i>Ophthamologist appointment</i> - This was and still is the most gut wrenching appointment we had. The ophthamologist did some initial testing, he then went and got an assistant to help him. Jeff and I weren't sure what to expect even after we were told in great detail what was going to happen. The assistant took us to another room and had me lay our little guy down on a table. She then literally held him down with all her might while the eye doctor propped Ryan's eyes open with these evil looking grip things. The screams that came from Ryan were ear piercing and frightening. I wanted to punch both the doctor and assistant in the face...I probably would have too if Jeff hadn't been there holding me back. Once they were done I quickly scooped Ryan up and we were told to go back to the exam room. I sat in the big black chair with Ryan in my lap while I listened to the doctor tell us that Ryan's optic nerves were underdeveloped. Ok, I rememeber thinking that's okay...to be honest I didn't even know what an optic nerve was at the time. But then he explained and all the air rushed out of my body, I'm sure all the blood pooled down to my toes. The room spun and if Jeff hadn't taken Ryan I'm sure I would have dropped him. He said (and I really don't recall his exact words...just what they meant). Ryan was blind.Jen Quinlan-Bangildhttp://www.blogger.com/profile/13468233369422016017noreply@blogger.com1